Coburn Kids

So… wow.  I’ve been sick.  My husband has been sick.  My kids have been sick.  We’ve been like the walking plague for a month now.  Passing it around and back again to each other.  I’m on the mend though and feeling so much better.  Let me give updates!

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.  ;)

So I have a lot to post about, lots of pictures.  I’ll get to that, but let me tell Adessa’s saga last week since I have a lot asking about it.

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.

I know, I know I haven’t updated in a month!  Terrible really.  I’ve been busy with work is all.  I have pics that I’ll try to get up in the next few days.

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.

So my parents have gone home to UT, my brother is back home too.  We had such a blast with them while they were out here!! We’ll run through the week:

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!!

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.

I know, I know… where are the updates?  Where are the pics?  I’ve just been crazy busy every day.  This is going to be a fabulous fun week though.  My parents are coming in to town tomorrow night, my brother Jason is coming into town the day after, it’s Adessa’s Birthday, it’s my brother’s birthday, it’s Father’s Day and we have a jam-packed week of going to the aquarium, Six Flags, birthday parties and more!  I’ll have lots of pics to post with all the excitement.

First off, I have no idea what happened to my blog!  All my categories are gone, my blog roll, ability to do pics through the WYSIWIG and miscellaneous other things.  Odd.

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.

Ugh, so much to tell about… happy things.  But right at this moment I am so frustrated I could scream!  In the ongoing saga of trying to set up Caden’s therapy we have a developmental therapist. Great!  Good, no idea what exactly they do though honestly. What I really really need for Caden is speech though.  He’s at a 6 month old level.  He’s 22 months old.  I am being told there is absolutely no one.  They gave me an option to drive down to the center (25 minutes away) on Thursdays at 3:00 pm.  Which is less then desirable and something I would only be able to do during the summer months.  As soon as school starts at the end of August this time would no longer work as my kids get out of school at 3:25 PM. I explained this to the woman and her “simple” response is that there’s no one else.  Period.  There’s no one who can come to the home, there’s no other center times. We’ll just have to continue to wait.

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.

So last Thursday was Caden’s developmental screening.  We had 3 therapists at the house: an Occupational Therapist, Speech Pathologist, and a Developmental Therapist. They assessed Caden and while the findings weren’t all that shocking I have to admit I was a bit disappointed!  Not with Caden certainly but they still put his overall development between a 9-12 month.  Which it was 4 months ago as well. So while he’s made some progress it’s very sllloooowww.  Just a bit frustrating. His speech is still at a 6-9 month old level.  So Caden will be having therapy 3 times a week, 3 different therapists, for an hour each time. He qualifies on 3 levels, first is the cleft, next is the prematurity and third is that he’s more than 30% behind considering he’s almost 22 months old.

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.

This Memorial Day weekend was busy, busy, busy. Saturday night we had some new friends over with their 16 month old.  What a little monkey he was! None of my kids have ever been climbers and just seeing the coordination this little guy had was amazing. I went out to see the new Star Trek movie (recommended) with them while Daniel watched all the kids.  Which wasn’t much effort considering they were all asleep by the time we left.

Sunday night we went to my brother-in-law’s sister’s wedding.  The reception didn’t start until 7:30 PM so I was a bit worried about how the kids would do. They were exceptional! The girls loved sitting down to a fancy dinner and they were very anxious to get on the dance floor.  They had such a blast and we didn’t even get out of there until nearly 11:00 PM.  My girls were ready to go the entire night, they begged to stay longer!

Then Monday night we had Daniel’s family over for a BBQ. Which was great just being able to hang out and talk. The girls love playing with their cousins and they all get along so well.  It was noisy, but good happy noise.  Daniel made his ribs and there was plenty of food for all.