So first update is that Caden will be going in for surgeries 9 & 10 this June.  They’ll be fixing his redundant lip tissue and then he has a fistula (hole) in his upper palate that needs to be fixed as well. (And yes, I do get a kick out of telling people that my son has his own plastic surgeon.) He doesn’t need ear tubes though since he passed his hearing test this time. It will be interesting doing all this with a 3 1/2 year old since he’ll understand so much more.  I imagine it will be much scarier for him.

We need to get him into the dentist as he has 2 cavities, so sad. Being a preemie though and with their notorious bad teeth this doesn’t surprise us. Brushing his upper teeth with the way they lay back against the roof of his mouth is difficult to say the least.

Next update is that we finished Adessa’s dyslexia testing.  There are 4 classifications of dyslexia and here’s the way they explained them to us:

Mild – Probably would never be tested.  Would struggle a bit when they were older in school, have some dyslexic moments but otherwise perfectly normal.
Moderate – Where most kids in the tutoring center are. They usually come in about 3rd or 4th grade when their reading isn’t progressing and they just can’t seem to keep up with the other kids. Usually very bright and smart and have been able to cover and hide it until this point.
Severe – Very early signs as soon as they enter school. Reading does not progress and everything is very labored.  Again, very smart kids and there is a huge disconnect in their knowledge versus what they can read and write.
Profound – Does not progress at all. Nearly impossible to learn how to read and/or write without extensive tutoring and help.

Adessa has severe dyslexia and severe dysgraphia (the writing side of dyslexia). She’s going to need a few years of tutoring in order to learn to overcome some of these problems. The good news is that her Chinese shouldn’t be impacted at all being a character based language. We just got done with parent-teacher conference and Adessa is doing fantastic in her immersion program. The writing she struggles with a bit but she is retaining the words better than the English side in reading ironically.

Learned some interesting things about dyslexia though. There’s a common misconception that dyslexic’s simply see the words backwards and it’s actually not that at all. When seeing a word on a page like CAT it takes just a few moments for their brain to catch up with what their reading.  So they see the T first. It explains why all of Adessa’s #’s are backwards as well.  17 is written at 71, etc.  Even when she writes 17 correctly she does the 7 first and then puts the 1 in front of it. So that’s helpful in knowing just what she is dealing with.

So we’re going to get her in tutoring twice a week for an hour each time and this will be for the next year or two. A lot of time commitment but she needs it and I would hate to see that enthusiasm she has for school suddenly disappear as she gets more and more frustrated.

As soon as I heard the term dyslexic something just clicked. So we went to track down exactly what Dyslexia means.  This is going to be a long list, I apologize. They say if your child is exhibiting more than 3 of these symptoms you should have them screened. I’ll just go ahead and put a * next to every one that Adessa has done, and a ** star next to those we see all the time.

People with dyslexia do not make random reading errors. They make very specific types of errors. Their spelling reflects the same types of errors. If you notice that a child who appears to be average or bright when they are talking to you is struggling to read, spell or write, this may be the strongest indicator that they may be dyslexic. Watch for these errors:

Reading:
** Can read a word on one page, but won’t recognize it on the next page.
** Knows phonics, but can’t—or won’t—sound out an unknown word.
** Slow, labored, inaccurate reading of single words in isolation (when there is no story line or pictures to provide clues)
* When they misread, they often say a word that has the same first and last letters, and the same shape, such as form-from or trial-trail.
* They may insert or leave out letters, such as could-cold or star-stair.
** They may say a word that has the same letters, but in a different sequence, such as who-how, lots-lost, saw-was, or girl-grill.
** When reading aloud, reads in a slow, choppy cadence (not in smooth phrases), and often ignores punctuation
* becomes visibly tired after reading for only a short time
* Reading comprehension may be low due to spending so much energy trying to figure out the words.
** Listening comprehension is usually significantly higher than reading comprehension.
* Directionality confusion shows up when reading and when writing
** b-d confusion is a classic warning sign. One points to the left, the other points to the right, and they are left-right confused.
b-p, n-u, or m-w confusion. One points up, the other points down. That’s also directionality confusion.
** Substitutes similar-looking words, even if it changes the meaning of the sentence, such as sunrise for surprise, house for horse, while for white, wanting for walking
** When reading a story or a sentence, substitutes a word that means the same thing but doesn’t look at all similar, such as trip for journey, fast for speed, or cry for weep
** Misreads, omits, or even adds small function words, such as an, a, from, the, to, were, are, of
* Omits or changes suffixes, saying need for needed, talks for talking, or late for lately.

Spelling:
** Their spelling is far worse than their reading. They sometimes flunk inventive spelling. They have extreme difficulty with vowel sounds, and often leave them out.
** With enormous effort, they may be able to “memorize” Monday’s spelling list long enough to pass Friday’s spelling test, but they can’t spell those very same words two hours later when writing those words in sentences.
** Continually misspells high frequency sight words (nonphonetic but very common words) such as they, what, where, does and because—despite extensive practice.
** Misspells even when copying something from the board or from a book.
* Written work shows signs of spelling uncertainty–numerous erasures, cross outs, etc.

Dysgraphia (writing):
** Unusual pencil grip, often with the thumb on top of the fingers (a “fist grip”)
Young children will often put their head down on the desk to watch the tip of the pencil as they write
* The pencil is gripped so tightly that the child’s hand cramps. The child will frequently put the pencil down and shake out his/her hand.
** Writing is a slow, labored, non-automatic chore.
** Child writes letters with unusual starting and ending points.
* Child has great difficulty getting letters to “sit” on the horizontal lines.
** Copying off of the board is slow, painful, and tedious. Child looks up and visually “grabs” just one or two letters at a time, repeatedly subvocalizes the names of those letters, then stares intensely at their paper when writing those one or two letters. This process is repeated over and over.
** Child frequently loses his/her place when copying, misspells when copying, and doesn’t always match capitalization or punctuation when copying—even though the child can read what was on the board.
* Unusual spatial organization of the page. Words may be widely spaced or tightly pushed together. Margins are often ignored.
Child has an unusually difficult time learning cursive writing, and shows chronic confusion about similarly-formed cursive letters such as f and b, m and n, w and u. They will also difficulty remembering how to form capital cursive letters.

That’s a lot of stars I know.  It was like reading a textbook description of my daughter. Every quirk I thought she had, from even the way she held her pencil… was classic Dyslexia. I had no idea!  It’s fantastic we found out when she was so young. There are sometimes behavioral problems with kids, 40% of kids with dyslexia are ADD/ADHD but thankfully Adessa is not. She has a better attention span than most 6 years old I know.

There’s really no way to know until the child starts to delve into reading/writing/spelling. We found out so early because her teachers are fantastic and thought the same way we have been. Here’s this really smart kid, yet she can’t keep up. According to her IQ and tests in other areas, her teachers told us she should be at the top of her class. That’s the problem with Dyslexic kids though they say. They usually are quite smart, so they can cover up and use strategies to compensate for a long time.

Her Dyslexia will not go away. There’s no magic cure or lessons that she can take to just instantly overcome this. She’ll probably struggle with a lot of things in school such as remembering dates, facts, directions and more. But at least we know that now, we’ll be able to acknowledge what her strengths and her limitations are.

In the meantime, I’ve gone ahead and contacted a Dyslexic tutoring center in Utah. She’s going to be evaluated and we’ll start getting her tutors who can help her learn to read and write like she needs to.

There’s a specific method they use for dyslexic kids called the Orton-Gillingham method. Simply shoving more books at Adessa and telling her to sound out more words or memorize flashcards won’t work. It’s going to be much harder for her to learn but I think with the extra help she’ll at least be able to keep up, since she’s just barely started to get frustrated recently that she can’t read as fast as the other kids in her class. The stats say that 1 in 10 kids actually has Dyslexia though, so it wouldn’t be unusual if there actually happens to be more children in her class with the same problem.

I’ve had a lot ask how this will affect her Chinese and thankfully, it won’t! While a foreign language such as French of Spanish might have given her a lot of problems, with Chinese being character based she should actually be able to pick it up and stay at the same pace as the other kids.  It’s all in how Dyslexic’s think. While reading up about it they say the problem that these kids have with letter reversals, jumbled lines on a page and words that run together is because their mind is trying to form an image on a page. It’s not trying to see the letters and words but make a picture. So actually, her Chinese should start to come along faster than her English writing.

The other month I was rolling up a rug in our main room so that I could sweep underneath it, my 6 year old turns and asks casually, “Oh, it’s time to move again?”

My 9 year old points out to me the other day that she has yet to go a full school year with a single teacher. In fact, in her 4 short years of schooling, she has had 8 different teachers and attended 4 separate schools.

I don’t know if this is a good or bad thing. Genevieve is used to being known as the “new kid”.  It doesn’t scare her, sure she gets a bit nervous but it’s familiar. I know my kids aren’t going to have a melt-down if we have to move again. They know what’s involved, what to pack, what to leave out and how busy Mom is during that time. By the way, this blog post is not “build-up” to any announcement, just a reflection. I hope to stay in UT for a good long time.

The kids are as busy as ever. Adessa decided to change from dance to tumbling and is enjoying it so far. Her Chinese is increasing every day and she officially has words that I can’t even begin to pronounce in her vocabulary. I received one of those phone calls the other day that I never thought I would as a parent though. Her teacher called up and said that I needed to ask Adessa to stop chit-chatting in English. So it was surreal to ask my daughter to stop using English but to use her Chinese when at school. I understand the reasons since it’s an Immersion program, but I still chuckled at the conversation I had to have with her.

Gena continues to do her fencing and violin. In February I have convinced her to risk her life with ski lessons.  She’s very excited, partly because I can’t stop talking about it. I remember very fondly learning how to ski when I was young and enjoying it immensely. I would love to get Adessa and Caden up there as well but skiing is expensive. So one child at a time will learn how to ski.

Caden has his next Cleft Clinic appointment in March. Should be interesting, I think we have at least 2 surgeries this year. Probably a lip revision and then another set of ear tubes. He’s had a break for an entire year being surgery free so I know this will be harder for him now that he’s older. He’s a bit sick right now with a cough but nothing seems to keep this boy down.

Adessa is in her Performance Academy where she sings and dances. She’s a natural performer so of course loves it.

This past weekend she performed at the Festival of Trees and we recorded her performance for all to see. She was so proud of herself and even though she was nervous performed great on stage. She even did a solo! She was so brave and she did it perfectly after all her practice.

Here is her first song “Holly Jolly Christmas”

And here is her solo!

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.

Random pics below in various stages of completion:

Outside, love the yellow w/ black door

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.

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 I can last for longer than 2 years in one spot.