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.

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.

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.

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!!

]]> http://www.coburnkids.com/2009/06/28/fun-fun-fun/feed/ 6 http://www.coburnkids.com/2009/06/27/cadens-marathon-cleft-clinic/ http://www.coburnkids.com/2009/06/27/cadens-marathon-cleft-clinic/#comments Sun, 28 Jun 2009 02:08:43 +0000 admin http://www.coburnkids.com/?p=496 So much to post about but I have to do this one right now as I need to remember all the info -

All right, so Caden’s cleft clinic at Lutheran General Children’s Hospital was exhausting.  It’s an hour drive there and I had to go through 2 hospitals and take 4 elevators to even get to the right place. We’ll do a run through of the doctors:

Plastic Surgeon – Everything looks good. Caden needs to see an orthodontist to see what to do about the lip tissue and if there’s anything we can put in his mouth to straighten the teeth.  Will have bone graft surgeries at probably 8, jaw surgery wouldn’t be until his grown into his skeletal structure around 15, might need some lip/nose revision about preschool age.

Speech Therapist – Gave lots of ideas to try to get Caden comfortable with a cup and liquid.  Gave suggestions for how to encourage movement of the front of his mouth so that he can do the mmm, nnnn, bbbb sounds.

ENT – Tubes are okay for now, thinks his body is trying to push them out right now though (normal).

Pediatric Geneticist – We went over all of Caden’s medical history, got referals for the Cardioligist, Opthamologist, Neo-natal follow-up. Thinks that we may need some further study of some of Caden’s defects. She was supposed to get back with me but we were moved on to the next appt.

Audiologist – *sigh*  A really really big sigh.  Caden’s hearing test is bad.  Again. The ENT wanted to see him in maybe Nov. and that’s now going to be moved up to much sooner. His tympanometry test (measures fluid in the ear) came up a flat line as well. It’s supposed to have a nice tall peak in there. His tubes are still in and the ENT said they weren’t clogged.  So why he’s having so much fluid in his middle ear is odd.  He doesn’t have ear aches, the tubes should be working but they aren’t. Which is sad because this will just set Caden further back with his speech.

Now on to the cute story.  While we were seeing the Pediatric Geneticist, Caden took her stethoscope.  He then started to lift his shirt and try putting it on his belly.  Then would take it and draped it around his neck like the Dr.’s do, and would sit there for a bit.  Then he would take it back off and lift up his shirt and put it on his belly.  It was the cutest thing ever!  And yet so sad.  That my baby, yes my baby!! who’s only at a 12 month old level development wise, knows exactly what to do with a stethoscope. The Dr. got such a kick out of it.  Caden doesn’t pretend play and this was the first time I’ve seen him do that (it’s an 18 month old developmental skill), though maybe he wasn’t pretending at all!  He certainly has seen enough Doctors.

Well Sunday night we got to spend 5 hours in Chicago’s Children’s Memorial Hospital ER department.  At about 6:00 PM Adessa pronounced at the top of her lungs that Caden had pulled his feeding tube out. She did all the investigative work herself though. She saw some drips on the floor, made Caden lie down on his back and pulled up his shirt. Just as she suspected… no tube. She then went frantically through the house searching for the mic-key button and when she found it let all of us know. Which makes me chuckle thinking of my 4 year old taking all that on herself.

We tried desperately for a bit to get the button back in.  We were not gentle, Caden didn’t cry but I know that ER’s take hours upon hours so we were a bit determined to no avail.  We then tried just getting in a Foley catheter to hold the hole open, didn’t work either.  As way of an anatomy lesson, your stomach regenerates it’s lining very very quickly.  Some kid’s feeding tube holes can close up nearly completely in just a 1/2 hour so time is of the essence. Since nothing worked we called up Grandma Coburn to come and watch the girls and off Daniel and I went to the ER. It should be noted though that we were smart and made some phone calls first to other ER departments that were closer.  Apparently, a size French 14 at 1.7 cm long mic-key button is not something most ER’s will have so it was a good thing we did call.

So here’s some pics from about 10:30 PM last night.  Caden was extremely good the entire time, just a bit fussy considering it was so far past his bedtime and he didn’t get a chance to eat.

I’m appalled.  My son desperately needs these services.  The state is supposed to help these children. My son is not a few months behind, this is not a case of a parent worried that their 2 year old only doesn’t talk much, or can only say mama and dada and is not speaking in full sentences.  My son can’t say a single word.  He has a few basic sounds (that of a 6 month old) but has nothing else.  Nothing. I recognize that I’m, perhaps, over reacting. Of course these other children need a bit of help, but as a mother I could almost cry and I’m seriously in mother bear mode. What am I supposed to do for my son!

Caden has plenty of interaction during the day, his sisters and Daniel and I are not a quiet bunch.  He is exposed to more language and sounds then my other 2 children were even.  I am frequently on the ground, on his level using the techniques that his old therapists taught us. Touching our mouth while saying sounds. Pairing together sounds with actions. Imitating sounds that he makes. My daughters do this with him too. I encourage him to make sounds to tell us if he wants something. There’s just not much progress.  I know how much many of us, including myself, take for granted the incredible learning process that our children do, but Caden needs help, he needs specialists.  Every month that passes he is further behind.  This is just such a critical time for Caden to develop these skills, these sounds and I feel like the window is closing.

I guess, if I’m really honest, I just have to admit I’m a bit scared. My little boy is this defy-the-odds baby in a little package and I had hoped he would have all ready started to catch up.  Just a little bit really.  Instead it seems that we are getting further and further behind.  While he’s indeed doing new little things it’s not enough to push him up the development scale.

With Genevieve she would stall and then leap with her development.  She would just be sitting there one day and within a week she was walking.  She wouldn’t have more then 3 words one day and then in a week had sentences. So I have been waiting for the same with Caden. Everyone screams at you not to compare them to other children and I’m not!  I certainly don’t expect Caden to be at a 2 year old level, I don’t look at even an 18 month old and wish he was doing everything they could.  I just want… steady progress I suppose.

That’s not what we have though, we have little things here and little things there. So as a parent I really am terrified that this lag he is experiencing is more telling of something I don’t want to admit or accept. I am grateful for my lil’ guy, and I am the first to know exactly everything he has overcome and just how precious he really is. But like any mother, I also dream of what Caden will do when he grows up, will he marry, will he go to college? And it is indeed very frustrating to try express those concerns and to get shot down by Doctors, Therapists and more who believe that the miracle of life I hold should be good enough consolation and comfort to me. Because I do want more for my child, like all parents I want him to reach his full potential and I want to sit back and dream of what he can accomplish. Right now I honestly can’t do that, because I am afraid of the future for him and if I contemplate one future I also have to contemplate the opposite. So I focus on the present and concentrate on developing the skills he has right now; loving him and kissing his sweet cheeks, tickling him until I get that hilarious baby giggle, watching him as he follows me around the house like a lost puppy, and bouncing him on my lap as he squeals.

Then I smile, because life is as it should be. Living in the present.

On Monday I took Gena and Caden to their new Doctor.  3 finger pokes, 3 shots, 2 physicals, 3 referrals and 1 exhausted Mommy. Gena doesn’t do shots well.  At… all.  The mere mention of a shot starts off a panic attack in her. All my kids are healthy, the Dr. couldn’t believe how big Gena is, she’s not even on the growth chart for her height.  She’s seriously tall.  Obviously she does not get this from me.

I have Adessa’s Dr. appointment coming up on Thursday which should prove traumatic for her and I. She has to go in for all her Kindergarten shots, as well as a TB test (out in IL all kids get tested for TB), and some finger pokes.  I expect a full scale meltdown.  Hopefully, maybe, not as bad as when Gena had to get her shots done for when she was starting Kindergarten.  That took 4 nurses to hold her down and me crying along with her. If that child knew obscenities she would have cursed and screamed every one. Instead the worst she could scream was “Bad Doctor” over and over again.

Fun times.  Fun times.