Playing Chess

Concentrating hard on a game

The pink blur is Gena, and they are doing a timed chess tournament here. Those blue boxes on the floor are the clocks they have to hit. They set them across the room so the kids have to run inbetween each move.

Making her move

This was actually a video and it’s so fun to see all the kids smiles while they are doing this.

Here’s the video so you can see them in action, it cracks me up watching it:

Listening as they play a game.

A fun last pic all the kids did together.

First, if you think your child might possibly, even remotely have an issue that will require them to be admitted into a hospital… do not go to an Urgent/Kids Care. Urgent cares are wonderful things for after hours when your kid’s pediatrician isn’t available: for that exruciating earache your child has at 2 AM in the morning, for the broken arm, for the flu, for swallowing a penny. If your child has anything more than this, say a symptom such as persistent vomiting, extremely high fever, lethargic, breathing problems, disoriented/confusion, head injury or some injury with a LOT of blood go straight to a hospital’s ER. If you go to an Urgent/Kids Care for any of the listed problems they are going to be sending you off to the ER. And all that waiting, registering, waiting some more in an Urgent/Kids Care doesn’t get you bumped ahead of the line if you are sent to the hospital ER just because you went there first. You just start the whole process over again.

Better even still, call the ambulance if your child has a serious symptom.

I’ve now seen and heard of parents who are trying to assess their child’s health who have driven them to the hospital when an ambulance should have been called. Ambulances have several advantages if you are on the fence, first off your child will be seen sooner then simply walking into an ER (not by a doctor necessarily, but certainly triaged). They can receive some form of immediate care while in the ambulance. They are much more expensive, do not get me wrong, and please do not use the ambulance if you feel your child’s symptoms/injuries are not an immediate danger to them.

If you can manage, get to a children’s hospital. There’s this mistaken assumption that a regular hospital’s ER will have every doctor on staff and all the equipment that your child, or even you, could need. This is not the case. While any ER can certainly perform life-saving intervention on your child, and is better then none, there are a lot of hospital’s that don’t have the right size equipment for your child. Like for Adessa they had no child-size nasal cannula. While an adult one works it’s extremely uncomfortable. Or for Caden we had to call 4 hospital ER’s to see if they had the right-size feeding tube before finding one. Even if the hospital has a pediatric wing on it this is not a guarantee that the ER of the same hospital has it.

Once you get into the ER you can either be triaged or be sent to start registering. Works differently in different hospitals. Breathing problems and chest/heart are always top priority FYI. Mention these problems and triage is immediate. Just because you are seen first though does not mean you get out of there any faster then any other patient waiting (an important note). 4 hours is our average time spent in the ER. From showing up to leaving. 4 hours. There has never been an ER visit with only 2 hours, it’s always 4 hours +. Even if you were the only one in that waiting room. Getting an initial assessment of your child is not what takes the longest amount of time, it’s discharge. Once you’ve been mended or the problems go away the real waiting begins. Getting prescriptions from the hospital’s pharmacy, waiting for discharge instructions, waiting for test results, these take up the bulk of the ER visit. You will literally, at some point in the ER visit, sit there and wonder if you are all done. Should I be leaving? Should I be talking to someone about leaving? Maybe they forgot about us over here. Why am I still waiting here? Are we done? Most of the ER visits we experience as parents don’t lead to a hospital admission so the “are we done” question will nag you.

The best thing about the ER is that you will always have to go at some inconvenient time and come home at some inconvenient time. Since you are looking at a 4+ hour stay this will inevitably conflict with something. Whether that’s work, sleep, vacation, holidays or so forth. So you can plan on being tired, stressed and worn out for the next few days.

So he’ll be going twice a week to Monte Vista Elementary for 2 hours a day. He’ll ride the bus there, which just seems weird to me because he’s so small. He’s only in 24 month clothing, even 2T’s are still too big on him. I don’t think he has any concept of what “pre-school” is, though we’ve tried to talk it up to him. He just kind of gives you this grin saying “you’re crazy if you think I understand you” and goes off to play.

I think he’ll do well in pre-school though. He’s a good little kid, taking turns and sharing is a problem (as they are for most toddlers) but he loves to be with other kids. Loves to interact, please people and just play. He’s also really good at just sitting down and absorbing when his therapists are over trying to work with him. So I think he’ll do fine.

One thing though, that is starting to slowly creep in and bug me, is the fact that because he doesn’t talk we are automatically asked if he has autism. I do understand that no-talking is a warning sign but anyone can spend 5 minutes with the kid and know that he doesn’t. The only reason I bring it up is I’m afraid that someone will put that label on him. We don’t know yet Caden’s full learning capacity, but I would hate for someone to box him into a category and made decisions or treat him as something he’s not. His speech delays are actually not a big red flag for me. He’s been through 6 surgeries, spent 4 months in the hospital as a preemie, he had a feeding tube for 2 years, has had a bilateral cleft lip & palate… adding it up all it makes sense that the mouth and speech are going to be big issues for him.

On the flip side are people who tell me stories of their sons/daughters/grandkids/themselves who didn’t speak until age 3 and then it all just came at once. I have been through that, Genevieve fits this description perfectly, but I know Caden will not. I don’t correct them as it just sounds like I’m pushing toward the negative, but it’s a fact. He’s going to struggle with speech and it’s going to be a very long process for him to be understood.

All in all though, I’m happy that he’s making some progress. He’s able to use more sounds and consonants, not independently yet but he’ll imitate us and his speech therapists. We’re hoping he’ll bring it all together soon to add more words to his vocabulary. On the signing front he’s doing really good though. He’s adding new words each day and seems to be able to do these independently with ease.

Party Set-Up

Kids throwing water balloons at a cactus

Potato Sack Races!

After the horse pinata broke open

Pin the tail on the donkey

Opening presents, Adessa looks really frazzled here

Outside playing

Water gun fight!

As for words Caden knows, currently at exactly 2 1/2 years old (30 months).

• Yeah
• Mama
• Uh-oh

And there you have it. All the words a 2 1/2 year old needs to know right there. Of course, the doctors will tell you that a 2 year old should have 50+ words and speak in 2 word sentences. Apparently by age 3 it’s supposed to be up toward 200+ words.

Caden doesn’t think so. With expressions like these who needs words?!!!

Such a cutie!

Can’t decide if he’s angry or annoyed here.

We’re moving.  Back to Utah. 2 moves in less than a year. The girls are taking it well though I am sorely going to miss full day kindergarten out here. Adessa adores school, and moving to just 3 hours of it makes me cringe. I guess I don’t have to worry though about how she’ll do in first grade like many other parents though, wondering if she can handle it. Going to year round schooling is also kind of nerve wracking for me.  I believe kids need a schedule and just uprooting and changing it on them every 2 months is difficult.

Daniel closes on our new home on the 16th, very exciting. Random pics below in various stages of completion:

Outside, love the yellow w/ black door

We decided to have the girls share a room downstairs because it was just perfect. Double closets and a huuugee bedroom. Bigger than the master even. Should be fun for them.

Kitchen going in. The island is hhuuggee and I get my double ovens!

View from the dining room into the family room and kitchen.

Back of the house, before it was painted. It’s a very large back porch there.

We decided to finish off the basement so it’s 5 bedrooms 3.5 baths. Believe it’s 3200 sq. feet. Large backyard. Should be fun, and I’m hoping we can last for longer than 2 years in one spot. Though if you ask Daniel I all ready have my plans for our next move. I’m just being practical after all!

Genevieve – loving her chess class.  I swear this is the only thing ever she actually comes home from and just talks and talks about it.

Adessa – got glasses!  Yes, that’s right.  Every single member of my lil’ family now wears glasses.  She’s so cute in them.

Caden – hasn’t gained weight.  He’s the tiniest thing.  We’re just a slight bit concerned because his feeding tube has been out for a month now (he pulled it out and quite frankly we decided to push the liquids rather then going to the ER… again… for another $200 visit). But he’s drinking!  Now he just won’t eat.  Hmph. Can’t win.  So our doctor has put him on Pediasure, high calorie and high fat to help him gain weight.  He actually loves the stuff and it comes in yummy flavors like strawberry, vanilla, berry cream, chocolate and more so he’s happy with it.  Also in news is that Caden is FINALLY getting speech services.  Yes that’s right, it took nearly 6 months. We still don’t have a single word.  He’s learned more signs but that’s really all we have right now.  6 or 7 signs he’ll do sporadically.

Daniel – crazy busy.  With work, with life, with everything.  Just got over pneumonia and he’s amazing.  ;)

Daniel and I have been so busy lately (hence no updates, as well as some computer problems) that we decided a small trip with just us would be great. So we planned for Utica, IL where they have a great hotel there with an indoor swim park, amusement park, hiking… everything.  Well we woke up the day to leave and I was feeling under the weather, so was Gena and Adessa.  We put down the money though so decided to try for it anyway, it was 90 minutes away so wasn’t too bad.

As we get in the car Adessa is starting to breathe funny.  I think it’s just because she’s come down with a cold but she’s acting normal, though a bit whiney. By the time we get to the resort I’m getting a bit more concerned, as I can see she’s breathing faster then normal but no wheezing or anything.  Adessa hasn’t had an “asthma” attack in 2 years.  It crosses my mind but really… it’s been 2 years.  Was told repeatedly kids can grow out of it. Adessa is bound and determined to get into that water park though so the others go on ahead while I gave her some medicine for her runny nose and let her relax a bit to see if that helps.  It does, so we get dressed and off we go.

Adessa is now really really quiet.  She’s having fun I can tell but no talking. We then have this conversation:

Adessa: “Mommy my leg hurts.”
Mom: “Your leg hurts?”
Adessa: “No it doesn’t.”
Mom: “Adessa you just said it did. Does it hurt?”
Adessa: “Yeah this one.”
Mom: “Okay, where does it hurt?”
Adessa: “It doesn’t hurt.”
Mom:  ….

Hmmm. Strange but she’s 5, I’ve had weirder conversations.  We float along in the lazy river and suddenly she gets up and walks out of the water.  I chase after her calling her.  She won’t respond. I ask her where she’s going… doesn’t respond. I take her hand and she just limply lets me guide her.  I get down to her level and try to talk to her… won’t respond.  I immediately get her back to the room, get her changed. Daniel comes in and I tell him I do believe it’s time she went to the ER.

The ER up in Peru, IL has fabulous nurses, they adored Adessa.   She spent 4 hours there, got 2 neubalizer treatments, medicine, antibiotics and a gazillion stickers, temporary tattoos and pencils.

We come home on Monday and she’s still laboring a bit to breathe despite her inhaler and medication (it was a holiday otherwise I would have had her seen that day) and on Tuesday take her in to see her Pediatrician.  I had no idea the severity of Adessa’s asthma attack this Labor Day weekend.  Her pediatrician is aghast that Adessa was not admitted to the hospital and put on continuous oxygen. When the Dr. heard she had signs of confusion, wouldn’t talk and was so labored in breathing you could see it across the room, I learned that this was not a normal asthma attack.  Adessa was not wheezing, I thought there would be for any asthma attack.  Her previous ones she always wheezed.  Asthma can get so severe, so fast… the wheezing stops.  As her pediatrician tries to stress the importance of this she starts mentioning respiratory failure and more. When I mention that Adessa was complaining of her back hurting and was in agony because of it (I thought she had just strained something coughing) she lets me know that this was the breathing muscles basically working overtime.  Severe overtime.  If a muscle, even your breathing muscles, works too hard it acts like any other muscle, it gets weak and can’t do its job.

So the next day she goes to school.  We have Daniel go personally to the school at Noon to talk to the Nurse and give Adessa her breathing treatment. An hour-and-a-half later we receive a call from the nurse.  Adessa’s oxygen saturation is only at 89% (you want it 95%+), has labored breathing and is wheezing in both lungs.  She asks what we want to do.  I, of course, tell her that we’ll be picking her up from school. In the meantime, I have a flight scheduled to leave in a few hours to visit my family in UT.

Daniel goes right over and picks her up and brings her to the ER.  They can’t get her oxygen saturation up and she’s on oxygen and nebulizer treatments. I am now still trying to pack, wondering if I should be going, running around like a madwoman trying to clean the house, finding a ride to the airport, and messaging Daniel non-stop for updates.  There’s talk of admitting her to the hospital but of course, it’s back-and-forth. So while I’m being driven to the airport Daniel sends the below picture:

Yeah, it pretty much stopped my heart too.  Daniel reassures me that everything is fine, that Adessa is smiling part of the time because they even turned on the sirens just for her.  :)  So now I’m at the airport literally freaking out.  Do I stay?  Do I go?  Is she okay?  Are they sure?  WHAT SHOULD I DO?!  Apparently I’m pestering Daniel so much with text messages and phone calls the nurses and doctors want to speak with me over the phone just to reassure the crazy lady on the other line that everything is okay.

Sleeping beauty on Daddy’s lap

Adessa watching TV in the hospital, her and Daddy had movie marathons

Adessa on her nasal cannula

So Adessa stayed in the hospital for 3 days.  We’ve had her follow-up with her pediatrician, we have an appointment with a Pulmonologist (lung doctor), she’s on steroids (which are giving her a big appetite), she’s getting asthma medication every 6 hours and she’ll be on an asthma preventative twice a day for a while.

She’s doing really well though.  Was spoiled rotten in the hospital but also understands why hospitals are not that much fun now.  I can’t thank Daniel’s family enough for helping us out though.  From Debbie staying with Adessa at the hospital for a few hours so Daniel could come get his car and change, to Dennis babysitting for a few hours, Daniel’s mom for giving up her entire week literally to watch Gena and Caden.  But Adessa is doing great now, except for 1 paranoid mommy who won’t let her run or climb the stairs too many times.

Quick updates though:

Caden is learning ASL like mad now!  He’s really getting into it so we’re trying to use sign every chance we get.  Which is hard, because we have the videos and we watch them but it’s just pieces here and there.  Would love to take a class and I’ve looked online but nothing is close to where I live.  Not to mention the logistics of getting babysitters and finding a time that my husband and I could both attend that would make it impossible.

We’ve got both the girls in summer day camps that they adore. They are making new friends, experiencing new things.  The thought of my 7 year old just hanging at the pool alone twice a week though, without myself as a parent hoovering over her, still brings a small piece of panic to my heart… but I’m learning to overcome that.  To really trust her new found independence.

We’ve been having a blast all summer. Swimming, bike rides, carnivals, friends, family, walks, running in the rain, naps, parks, exploring, movies, fireflies, BBQ’s, picnics, puppet shows, playing in the sand, games and just fun galore. It’s been a wonderful few months.  And to all of our UT friends, it’s in the 70′s here!  It hit the 80′s for a couple of days but it’s been so nice.

We have Caden’s birthday next week!  My little guy is going to be 2.  Which is just… so overwhelming to me for some reason.  But more on that when it’s his actual birthday.

Thursday – Wednesday night my parents flew in and Thurs. we all planned to go to the Aquarium… until we found out it was free aquarium admission week for Chicago. The wait to get in was 3+ hours!  Thankfully there’s a whole bunch of museums all close to each other so we just decided to head over to the Field Museum of Natural History. It was absolutely fascinating, highly recommend for both kids and adults.  Pics below:

Walking through the mist into the Water exhibit

Sitting in an Indian Lodge on Buffalo Skin blankets

Gena and Caden pushing buttons to hear bird sounds

Outside the museum posing with their souvenirs they got

Caden was so tired by the end of the day he fell asleep like this in his stroller

Posing by Soldier’s Field Remembrance Wall

Friday – Thursday night my brother Jason flew in and Friday we were supposed to go to Six Flags.  This was what Adessa wanted to do for her Birthday instead of a party.  But it was raining with possible chance of hail!  So instead we headed over for some fun bowling and playing games at Brunswick XL.

Gena and Adessa riding a simulator

Uncle Jason and Daniel racing

Caden playing his first video game!

Saturday – Was the big Six Flags day.  We left a bit late but spent the entire day there until 9PM. Adessa went on her first big roller coaster, she begged to go again she loved it so much. Gena is ready to just take on the whole park by herself.  She’s big enough for every ride there. We also went to the Six Flags water park and that was fun.  The kids area was great for Adessa and all the big water slides kept Gena entertained and running Grandpa around ragged. After 2 hours of that, it was enough and we headed back to the rides. The kids did not want to go home at the end of the night. I didn’t take very many pictures, because I was too busy having fun!

Picture of the whole gang, minus me taking the picture of course!

Picture of Caden playing in Wiggle World

Sunday – We got to celebrate Adessa’s Birthday, Uncle Jason’s Birthday and Father’s Day! We started out with a wonderful BBQ (thank you Daniel!) and then moved on to cake and presents.  We had the whole gang over from my family to Daniel’s family and that was wonderful.  I can hardly believe my little Adessa is now 5 years old!! I love you ‘dessa!

Adessa and Jason blowing out the candles on their Birthday Cake!

Angel, Gena and Adessa posing

Gena and Adessa Oo’ing and Ah’ing over the water baby

More presents!

Jason opening up his Birthday presents

Jason and Adessa opening up a present together

Caden thought the water baby box made a perfect seat for him

Daddy opening up Father’s Day presents

Grandpa opening up Father’s Day presents

Monday – Sunday night my parents flew home. Daniel went back to work on Monday and the rest of us had a down day, just playing with toys and hanging out at the house with Uncle Jason.

Tuesday – Legoland.  The girls had a fun time and so did Caden! The lego exhibits were very cool to look at and the girls were both proud when they made and raced lego cars and won some of the other kids there.

Sitting outside Legoland

Posing with lego R2D2

And of course they insisted on a photo with Darth Vader, though I think Adessa was a lil’ nervous

Chicago done in Lego’s

Gena and Adessa on a ride they have at Legoland

Caden playing in the lego’s

After Daddy came home from work the girl’s and him had a water fight outside!

Wednesday  – Transformer’s 2!  Jason and I went, we both loved it.  Recommend it.

Thursday – Caden’s marathon Cleft Team Clinic which I reported on below.

Friday – Jason left for the airport and within 2 hours of his leaving Adessa and Daddy were in the ER.  Adessa “saved” Caden from swallowing a penny.  Which she then promptly put into her own mouth and accidentally swallowed.  I actually heard some gagging and went to check on Caden but it turned out it was Adessa who then started yelling and becoming hysterical that “Caden made her” swallow a penny.  It all made sense in her 5 year old brain that “saving” her brother from swallowing the penny by taking it away from him made her then swallow it. Now, I didn’t think anything of it but being a good Mommy I called her pediatrician.  The nurse told us that we indeed needed to go and get some x-rays.  So off they went and I stayed home with the other 2 children.

Cool x-ray of my 5 year old and the penny in her tummy

Finally, LAST BUT NOT LEAST, I have the most adorable picture of my 7 year old Genevieve singing a made up birthday song to Adessa on her birthday.  It’s just the best picture of them.  It was taken in the car on the way to the Museum.

Isn’t that picture just adorable!!

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