Coburn Kids

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.