Still not good at updating

Hey all. It's apparent that life is way crazy and I'm HORRIBLE at updating this thing. It's been a crazy few months since I've last updated.

Kaelyn had a massive "UTI", but after an ultrasound and VCUG (the after effects of which were funny and sad as she had sedation and was goofy as all get out) we found out it was likely a kidney infection due to her VUR. Basically her ureter to one kidney is too short and too wide, and if she drinks or eats certain things it can cause her bladder to spasm and reflux the urine into her kidneys. Sooo..... Long story short It knocked her on her fanny for a good 4-5 days, she missed school, had multiple appointments and we now give her prophylactic antibiotics. Which are NOT cheap because they have to be liquid. What 5 year old swallows pillform meds? None I've met, Even if it is cheaper.

The kidney infection came the week of Aria's 3rd birthday. It was much fun! We got to see out of town family (Grandma Sandy came to help us out while daddy was away for a work training out of town) Cousins came over, friends, aunts, uncles. We had a BLAST and she got a bit spoiled. But hey, you only turn 3 once, right? We followed up with the holidays (crazy as usual) and New Years, which we hosted. Great fun but a "sweet song" caused some damage to the foot stool mechanism on one of our couches. Funny story and my awesome father in law helped fix it this last sunday! WOO HOO! (word to the wise, if you are in western wisconsin, don't buy furniture from Rassbach's Furniture. Poor customer service to say the VERY least).

Our 2016 has been very uneventful. We had one suspected UTI/Infection but it turns out it was most likely something she ate that caused spasms and discomfort and with her learning delay its probably difficult to verbalize the difference between hurt/pain and discomfort. All in all, I'm a pro at catching pee. Very important life skill.

We've had a good month of February too! Kaelyn met all of her IEP goals for PT! It's all good! We also had our first trip to the hair salon due to a DIY hairstyle kaelyn tried to give herself. It wasn't as bad as some, but enough we needed a trim to even it all out and not look like my child purposefully had a redneck-ified mullet!

Aria also traded in her toddler bed for a twin and is now also POTTY TRAINED! 24/7, awake or asleep! Which gives me hope that one day Kaelyn will learn to wake up at night when she has to go potty. It upsets her that she still wears pull ups to bed and Aria doesn't. It's a struggle that has resulted in a few melt downs. Thank GOODNESS for my diffuser and putting in some "Panic Button" essential oil blend and doing some breathing. Cuz lordy almight, this kid is getting strong. Just a reminder of the differences between the girls are more evident as they grow up! And boy are they growing!

I've got a few bonus kiddos here today and I'm WORN out. Aria had a good bug tuesday and was sleeepy and whiney and more than a little emotionally needy yesterday so not a whole lot got done and after a night of waking up every few hours with her, we slept a LOT. which is funny because I do NOT feel rested. I feel worn out and crabby. Here's to me, screwing on my happy face and probably bailing on my weekly dinner with the ladies. because I'm just too darn tired. Unless I make some coffee and take a nap while Kaelyn is at school and Aria and the bonus kids take a nap too!

Shout out to a new aquaintance and fellow chromosome mom, Elysia, who found my blog and sent me an email! Welcome to the club and thanks for the email! Hope to hear back from you soon!

Anyways, I better cut this short as the peace and quiet in this house is short lived and the littlest extra is now awake and requiring cuddles!! (and who doesn't love baby cuddles?)

More later!

Lara and the girls!

Here is a picture of the girls at the Mall of America Build a Bear. We visited during one of our trips to get her silly kidneys checked out at SPCH!

Kaelyn's recent revelation

Today, I was browsing the internet while I waited for the bus to drop Kaelyn off at home. I was reading an article on today.com (click this link to read the article) and heard the little yellow bus RUMBLE up the street and forgot to close it down. You see, Kaelyn LOVES to browse my facebook, make new friends for me, delete some old ones, and try to play all these games. Safer to have it closed than have to re-add a cantankerous family member.  While I was fixing up her snack, she looked at the monitor, pointed to the first picture and said " "hey. It looks like me!". It kind of struck me as odd that I never wondered if she would identify with someone with Down Syndrome.  Looking at her, especially when she is tired, her eyes are more prominently almond shaped. Her geneticist said that since she didn't have the full 3rd copy of the 21st chromosome so she wasn't going to use the label/diagnosis of Down Syndrome because they had no way of knowing what would be effected. I have NO problem with the label/diagnosis either way. She is charted on the Down Syndrome growth chart, milestones are judged the same. A lot of how we deal with her, her health (yearly thyroid tests) her education (delayed speech) is the same as if she had the full copy of chromosome 21. But I don't think she's ever been around another person that looked like her, in that way. I guess I need to do a little reading, a little research and see how we can handle these questions in the future!

In other news, we've had a busy summer, Went camping, adopted a dog from the local humane society, and Kaelyn is on her 2nd year of 4k! She's loving her school, her teachers (shout out to Miss Wendy and Miss Billie!) and is growing in leaps and bounds. Her speech is coming along quite nicely and her sentences are getting longer. She can express what she does/doesn't want, what she feels ("I need to hug you mom!") and just be a silly girl. Aria is turning THREE soon, and got her first haircut yesterday. She was so good about it! I'll drown you all with pictures next time. I'll just post this one here.  We had so much fun camping!  Thanks for reading and sorry I haven't posted in so very long! I think my dad (Shifty Sven)  blogs more than me! 

Major slacker updating here

Oy. to think that my last post said "I wonder what i'll do with all of my free time?" Clearly from the lack of posts, i've kept plenty busy. Papa D commented on my LAST post so it was a bit of a kick in the pants to do another one. Almost like I was put on notice. SO thanks dad!
Cold and flu season has started at our house. We've all been turned into booger monsters and we are deeply contemplating an investment in the Kleenex corporation. DANG! We've gone through a lot of kleenex and lysol. We are all on the mend and happy to report that our consumption of snot rags has decreased.  While we had our miserable colds, we had a plumbing incident where apparently the previous owners flushed some sort of shop rag and it blocked our main pipe out of the house. We had to call a plumber with a snake (which was HUGE) and rent a carpet cleaner to hopefully suck all of the water out of our carpet. For a good week our house smelled wet and musty but the carpet/pads seem to be drying. It was just a rough couple of days, that is for certain.

Kaelyn is still doing well in school. Only 2 or 3 accidents in a whole month and usually just off of the bus. She knows all the names of her classmates and enjoys the themed weeks they've had. One was "Mary wore her red dress" (click it. )its the cutest song the first 300 times you listen to it. And the fun part is that Kaelyn is starting to show a lot of interest in singing along to music. Her current favorites are "All about that Bass" (radio version to edit out the cuss words) and we also like Fancy by Iggy Azalea and Shake it off by Taylor Swift. She knows certain parts from those songs and sure sings them loud. Kaelyn also enjoyed the Pete the Cat Unit where it was based around "I love my red Shoes".

They recently had Fire Safety day at school and did Firetruck art and saw a firetruck! She was so proud of herself to show me the art they made and said "Like Tammy!" (Papa Dustin, when you read this, be sure to tell the Mrs!)

This last week has been super busy. We had company come up on Tuesday night. My mom, sister Chelsea, and nephew X came up to visit for a mini-vacation before Aria's 2nd birthday party this last saturday.  The cousins enjoyed so much time together, playing and cuddling and watching movie. And it was very nice and so appreciated to have my mom and sister here to help with the pre-party cleaning and food prep. We got to go trick or treating together and Kaelyn was Doc McStuffins, Aria and X were matching monsters. It was very cute. I'll have to pull the pictures off of my camera and add them into my next post. The kids did well in the chilly weather and X walked most of the way. Such a little bundle of energy he is.  Saturday was little sister Aria's 2nd birthday party. Someone must have mentioned how much we like art because man oh man did she get art stuff! We are all set for a long and blustery winter indoors. We even broke out the paint dab markers and did some letter art because the girls wanted to do art and it was the first thing they grabbed. We have squeezie paint brushes, the dot art markers, regular markers, crayons, color books, paper, homemade scented glittery play doh (thanks Auntie Jen! We can't wait to bust that stuff out very soon), play doh fun factory (so you can squish allof those FUN shapes. Aria also got clothes, a new jacket, stuffed animals (webkins). But I think the hit of the weekend was her very own Grandma Nancy blanket. Kaelyn sleeps with the one we got at our baby shower and is unwilling to share her "Nancy blanket" so GG Nancy sent my mother in law to the party with a blanket for Aria and she sleeps in her own bed now (as opposed to climbing into Kaelyn's bed) and we are all much happier for that.

Yesterday was just a day to tidy up a bit. My mom, Chelsea, and X left yesterday and my girls were so sad! But Kaelyn cuddled up with her daddy while i took the birthday girl to urgent care thinking she had an ear infection. Nope! Turns out she's just full of wax that needed help to get itself out. So now we are going to do some mineral oil drops as suggested by urgent care and hope that she doesn't have issues like I did when I was little.

Well, Here are a few pictures to tide you over until i can get a hold of the Halloween pictures.

Thanks for reading and come back soon!

Lara, Kaelyn, and Aria (and daddy too!)

first week of SCHOOL!

Goodness me. Nobody ever warns you about how hard it is to put your baby on a bus and watch it drive away. But we did it! We survived! Kaelyn did great and made a friend on the bus who turned out to be a classmate! YAY!
Here is a few pictures from her first week of school.

 She wasn't really into the thought of going to school. 

at least until she made a new friend! That turned her whole experience around!

 Reading her book and waiting for the bus. A new favorite. "Round is a mooncake". Definitely on our list of fun book!

We had an accident right off of the bus on Wednesday but yesterday was good and she has come home with a few new phrases and uses the names of TWO of her class mates! *not going to use their names w/o parental permission. but rest assured, it is SUPER cute!*

So now I am at home on a cold rainy day, Aria is napping, Kaelyn is at school, and I'm running out of stuff to clean! I organized my bathroom closet, I'm getting caught up on laundry, I've mopped my kitchen TWICE this week. Heck, if I wasn't catching up on laundry, I wouldn't have so many clean towels to put away. I'm terribly afraid to see what happens the next 3 days that there was no school! 

On the flip side, I am missing my girl and being alone is NOT so fun. If I keep up on my cleaning I will need to take up some sort of hobby. Aria naps the whole time! Without the kids messing up the house behind me, I get stuff done! Maybe I will even blog a little more reguarly! Or with a little peace and quiet I could podcast a time or two! Who knows!

I made the mistake of keeping Aria up to see Kaelyn off to school the other day... NO BUENO. She cried "MY KAELYN" right up until she fell asleep. After that I made sure to wake her up so that she could see that her sister was INDEED going to return home on the yellow school bus. 

To sum up the week, school is going great! Kaelyn made a friend or two, she likes her teacher, and riding the bus was not the terrible event I feared it would be! I give a gold star to all of us! 

If I may ask a favor, and i dont do it often, My nephew was born early a little over 2 years ago and gets sick pretty easy. They think it may be an auto immune issue. If you could say an extra prayer for him that his numbers go up to where they need to be that would be awesome. All of these doctors visits are hard on any parent but especially so for a single momma. Little man loves his cousins and my girls love him just as much in return and we hope for a happy and healthy winter. If enough of us bend the ear of the man upstairs, who's to say it won't happen?

Until next time!

Lara, Kaelyn, and the rest of the nutty bunch!

Preschool? wow.

Hey there guys! Look at this? two posts in less than two weeks!

We are creeping up on the start of the school year and looking back at the picture I took before 3k? Kaelyn looks so grown up! She's grown by leaps and bounds, despite still being behind her peers, but that doesn't make any of her achievements any less precious or monumental. She jumps, she is no longer terrified of playground slides (although the tunnel slides still bother her at first, she still gives them a good go!), her speech is improving, her pretend play is improved a hundred fold. She now names dollies and stuffed animals. Aria's cabbage patch dolly is named "Mary" and since daddy tried to name HERS "Gertrude" she now just calls her "Trude" yeah. great huh? :D And today she named her stuffed puppy from her "bonus grandma" Wendy, "Rudy". I'm sure its because of her new found love of Doc McStuffins.(and Sherrif Callie, although she calls her "sherrrf Callie" its still stinkin adorable).

Aria on the other hand. What a little pistol! Unlike her sister, she has NO FEAR. And her speech is also growing  and improving. I think her and Kaelyn are helping eachother with their vocabulary and expressive speech. She's starting to want to dance to music, learning to clean up after herself and is more affectionate every day! Just seeing how these 2 are is amazing! It's very touching to see that they are so connected and bonded to each other. When one is sad the other rushes to hug her close and give a smooch. It really warms my heart. Lately she has been crawling out of her toddler bed at naptime to fall back asleep in sissy "kaynin's" bed. Seems like we just put her in that bed and already she is trying to rush this whole "growing up" business and get her own twin bed? I call shenanigans. This momma simply isn't ready!!

In one week my dear friend will marry the love of her life and we are SO EXCITED!! "Auntie Ronda" and "Uncle Bob" are getting married at a local vineyard and it is going to be beautiful. I only have ONE flower girl for this wedding so hopefully it will be a little easier than trying to wrangle both girls and keep them happy and clean. After that, my awesome in-laws are coming up for a visit and our annual trip to the Zoo! I can't wait! We've been counting down the sleeps they have until gramma and grampa get here and I think the girls are impatient because they "call" them and think that every car down the street is their papa and gramma. It's adorable!

I've been so blessed. Between 2 amazing little girls who are growing so much, an amazing husband who is a great father and partner in this journey. And then there are the other momma's I have met who also have children with Partial Trisomy 21. Our little facebook group, along with the Unique group are a great resource for a momma like me. We all have children with rare chromosome disorder diagnosis' and even if the duplication/deletion isn't the same, a lot of the help and advice is still great and so very helpful! If you found my blog helpful, inspirational, or interesting, I am so glad you are here. That's all I really wanted to do with this blog. Oh, and share what an amazing family I have. I am TRULY blessed.

I'll leave off with a picture of Kaelyn and her "Doc Stuffins Braids". I love this looks and it keeps her unruly, fuzzy hair out of her face. :D

quick post

Debating an occasional podcast blog post. any body ever do this before? might be easier to keep up to date if every so often it wasn't something i had to sit down and type? I dunno. just a random thought. Have a good day!

another "long time no post" post

The month of May. SUPER BUSY. End of the school year, Sister in laws Wedding. Both Kaelyn and Aria were BEAUTIFUL flower girls along with their cousin "K" (no permission to use her name so K is what we will call her"). It was a beautiful wedding, tear jerker vows. sigh. takes me back to 7 years ago (yesterday, in fact) when Jeremy and I said our vows in front of family and friends and started this crazy and wonderful life together.
After that we had June, Fairly quiet. Just a lot of normal day to day stuff. Gardening (i have 3 bush pickle cucumbers sitting on my counter. awaiting more so i can make a batch of refrigerator dills to maybe take camping.), lawn work, library trips, walks (literally 5 blocks) to the farmers market, and lots of fun and family time.
Kaelyn's speech lately, it has just taken off! Going to make some tough decisions about preschool (whether to do 2 days of early childhood special education classes (at the elementary school in town) and 2 days at our churches preschool, or do all 4 at the elementary school). I gotta tell you, i'm leaning towards the 4 days of a smaller class that is more focused on Kaelyn. I'm strongly of the opinion that she was a BIG people watcher at our church preschool because she was behind in speech and felt overwhelmed. The world "overwhelmed" came up several times in her IEP meeting. I'm hearing phrases like "Mommy, I found it!" and "Diaper change for sister, mommy!" and the light in her eyes? Its amazing. She knows she is doing so well and improving. We constantly say to her "did you just say [insert new phrase/word here]??  That is amazing! we are so proud of you!" and she just glows!
Potty training is still a struggle at nap/bedtime. Naps are few and far between because it's not going to be an option come school year time since she will be in an afternoon class. I'm not sure if this is typical of all children with partial trisomy 21 or even of DS, but it is very frustrating to say the least.
We now have a group of 4, soon to be 5 parents in our little Facebook group. Kaelyn wont be the oldest anymore! It will be amazing to see how much we can look forward to our cuties doing as they grown and learn and thrive.
The biggest thing, in my opinion, that has happened since my last post is that we went to the local county fair. (5 blocks away) and Kaelyn rode so many rides! She did the Ferris Wheel with me and Jeremy. She rode the "Super slide" and the "crazy swings" and even did the little car ride with Aria! Both did so well and my fears of a terrified tot with a meltdown were completely unfounded! Sure, she was unsure of walking up the stairs for the slide (all 30-something of them) but she got up, went down, (mostly without incident. She did get stuck as i think she was too little to get enough momentum going, but the second time I gave her a good push and she just flew.) I was so worried that it would be out of her comfort zone and she would do her usual "crumple and melt" routine but she just smiled through each ride with the wind in her hair! Never again, will I underestimate my girls. It was AMAZING!
Lastly, I want to take a moment to recognize that my husband and his family lost a great woman. He called her "Grandma Jo" and she lived next door to him and took care of him and his brother (and possibly his sister but i'm not sure). She was 88 years and hung on far longer than the nurses caring for her thought. She lived a good and full life and is now with her husband. I'll end my blog here and post a few pictures of Kaelyn at the fair. I'm even posting one with ME in it! That truly never happens! I'm usually behind the lense so enjoy it!
We'll be off camping this weekend for Jeremy's family reunion (his dads paternal side of the family) and Kaelyn and Aria will BOTH get their first taste of camping. SO EXCITED!

Lots of love,
Kaelyn and Lara (and little Aria-toodles too!)

p.s. Shout out to Katherine! Her daughter also has PT21!! Just in case you are reading, I'm glad you responded to my email and I can't wait to hear more! :D

Kaelyn and Daddy taking a "Selfie" on the Ferris Wheel. I think she's too busy looking around to smile for the camera, but that is surely her "busy thinking" face.

 

Mommy and Kaelyn on the Carousel. She loved it! I even got her to have her hands and say "YEEE HAW!!" Such a cutie!!