Coburn Kids

All right, 18 month appointment today was… ahem… eventful.  No shots!  But he still got poked. Let’s just start from the top and head south.

Head – Gray hair.  What’s that you say?  Yes, gray hair.  Caden has so little hair anyways it’s really hard to tell a color. This morning Adessa commented on how Caden’s hair is gray.  I, the ever polite and educational mommy told her, “no honey, that’s blonde hair”.  Didn’t think anything of it.  Go to the Pediatrician and hear the Dr. say, “he has gray hair!”.  What the…. I don’t even know what that means but I’m sticking with ash blonde and no one can convince me otherwise.

Skin – Eczema.  It’s bad, we are going to start him on Zyrtec for the itching.  This is where the poke above comes in.  Doctor drew blood for an allergy test. As a fact for you, preemies are hard to get blood from.  Apparently there’s a lot of scarring on the veins and it makes them thick but Dr. Lantz is a pro.

Mouth – Swallow study. Got our referral from our Dr. to get this done. Caden also hasn’t gained any weight in like… 4 months, still 22 lbs.  But he moves around a lot more now.  I’m sticking to that story as well.

Heart – Murmur. This could just be the small L>R shunt he has since we haven’t heard it in a while, no idea.  Cardiologist appointment moved from 3 year old to 2 year’s old.

Thumbs – X-rays. Got a referral to get some x-rays to check out Caden’s lil’ thumbs.  See what’s going on there with the deformed one.  Check bone structure, etc.

Whole Body- Geniticist. We got a referral to get Caden checked out by a geneticist for all his little oddities. They call them congenital malformations… oddities is better. 

M-Chat Test – Bogus. It’s a bunch of yes/no questions.  It’s to test for Autism and it’s pretty new but gaining widespread use in pediatrician’s offices.  I never had to fill one out for Gena and Adessa.   Nurse was very concerned about Caden and his… I don’t know, failure at the test?  Though it’s not really a pass or fail test.  I just smiled at the nurse.  When his doctor came in we both kind of chuckled.  I should note that the test itself is not bogus by the way, only in Caden’s case. It’s not really a test Caden can do right now or something I would expect him to do.  Questions range from “Does your child walk?” to “Does your child ever pretend, for example, to talk on the phone or take care of a doll or pretend other things?” You can see all the questions for the M-Chat here if you are curious.  How to score results are here. They use it to test children at their 18 month visit and their 2 year old visit now. Caden is behind but has great people skills, great eye contact, great interactive skills.  So we’ll look again at 2 years old but his Dr. and I are keeping an open mind with even that depending on what the next 6 months will hold.

Follow-up – In 3 months. Dr. decided that with all the tests and Caden being Caden we should do a 21 month appointment instead of waiting until 2 years old.  I agreed.

So this week will be filled with the job I know so well… appointment setter!  We got our tax return back, having such huge medical deductions results in a nice one by the way.  So we’ll use that money and invest it right back into, you guessed it, medical! I’ll keep ya’ll updated.

I had to share the picture to the left, it’s the ONLY one we have of Caden smiling with his cleft when he was about 5 months old right before his lip surgery.  It wasn’t for lack of trying either, Caden’s adjusted age was right at about 6 or 7 weeks old so it fell right on the normal timeline for babies and their first smile. I grabbed it with my cell phone and it’s truly the most precious and prized picture I have of my little guy! Every Cleft Mom is so sad when those wide lil’ smiles disappear.

So today was another one of those marathon-doctor appointments for Caden, this time with his Cleft team. My Dad was great and offered to watch my 2 girls for the 5 hours it took. Daniel was there to take care of Caden at the appointment which I’m extremely grateful for! I can’t lift Caden right now as I did something to hurt my shoulder.  No idea what, but last week it was hurting a bit. Then on Saturday I had to carry Caden around for about 2 1/2 hours at a birthday party the girls attended and I majorly did something to it then. Breathing is painful… I’ll live though.

I’ll run through the doctors we saw at the Cleft Clinic:

Financial – First we saw the financial coordinator.  We may be able to get some help to pay for Caden’s Cleft clinic appt.  So good news there.

Speech – Lots happened here.  She wants us to get a swallow study for Caden ordered, to help us in the never-ending quest to find out why Caden doesn’t like liquid.  It’s really quite odd, considering he eats fine. She also wants his speech stepped up majorly.  An 18 month old should have about 20 words… we have Ga.  Which, technically, doesn’t really qualify as a word. It’s darn cute though!!

Orthodontist – We found out that around 5 Caden might need another surgery we weren’t expecting.  This one involves x-rays and looking at the area around Caden’s nasal cavity to see if we need to fill it in with some more bone. We went over his other surgery that he’ll need, the famous break-the-upper-jaw-and-move-it-forward one.  They all, of course, have fancy sounding medical names which I couldn’t say let alone remember for the life of me! We were referred to a Pediatric Dentist for Caden, very important, as well.

Plastic Surgeon – Next we got to see Caden’s plastic surgeon, who just happened to be on call there, Dr. Warnock. He’s very very pleased with how Caden’s palate and lip look. The only thing we have to watch is the redundant tissue on his lip since he’s biting down on this. He’s also getting 4 new teeth, all at the same time.  Poor thing.

ENT- We talked to the Ear, Nose and Throat doctor about Caden’s recurring sinus infections and got some advice on that.  One of Caden’s ear tubes is blocked, but this is a wait-and-see. Otherwise, follow-up in 6 months.

All in all it was really a very informative appointment and finally seeing the Cleft team was a blessing.  I was disappointed we couldn’t talk to a Geneticist but will probably have to do that on my own, but at least we are now on the books with the Cleft team.

So little Caden has this thumb on his left hand that’s a bit off.  I noticed it when he was a baby.  To describe it, I would say it looks like one side of it got smashed and flattened a bit.  It’s got a hump on the top and while it’s not that noticeable it may be as he gets older.  Our doctors and Caden’s plastic surgeon know about it, it’s fully functional.  All the joints move correctly, he can flex it and it’s just another lil’ odd thing about him.  I’ve noticed over the last couple of months some odd behavior he does with that hand.  When he was younger, before he would pick up an object with that hand, he would rub the object with the side of his thumb… almost like he was trying to feel it.

Yesterday, I noticed that he picks things up strangely with that hand as well, he’s tucking his thumb under.  I have a video below to show what I’m talking about.  My first instinct is that he doesn’t have as much feeling in that thumb, especially in the pad of the thumb.  So he’s using the sides to feel it.  It would make sense, if there’s decreased feeling the proper pincer grap might be difficult as he couldn’t feel if he had a grasp on the food. He can’t, certainly, tell us if anything feels different then the other side but it caught my attention.

The other day, when Grandma Warner was over, I decided to get crafty with the kids and we made popcorn ball snowman.  Check out the masterpeices below:

Popcorn Snowmen!

We’re starting a new therapy with Caden, behavioral based therapy.  It’s basically a positive reinforcement aka rewarding good behavior method. His Speech Pathologist is introducing us to it… and yes it’s very much the same way you train dogs.  Now don’t brand me with a “Bad Mom” tattoo on my forehead but it’s the exact same concept.  Plus, I love dogs and think of them as very intelligent, sensitive and compassionate animals.  You should see how much our dog Darwin adores babies.  Our dog is the first one to come running when Caden cries and tries to lick him and whines until one of us comes to pick him up.  Darwin is a mother at heart.

This is all happening because Caden has finally passed the 9 month mark in his gross motor development and though we aren’t quite there with comprehension… there’s really no way to tell.  His speech may only be at a 6 month level but he could very well be comprehending more then that so we’re going to shoot for that.  Yes, Caden is that far behind but he’s making progress.  This new therapy is for Caden to learn how to drink from a sippy cup.  We are having to use his G-tube for all his liquids because Caden doesn’t “get” what to do with a sippy cup, a bottle, a cup or any liquids in general.  So we sit with him 3 times a day and force him to put the sippy cup to his mouth with his own hands and then reward him by letting him play with a toy for 20-30 seconds inbetween.  No is not an option and we just reinforce that drinking is a good thing, that he’ll be rewarded for it.  It’s a game for him.  We are doing this in an effort to one day, hopefully, be able to get rid of his feeding tube.

I had another comment about the “catch up by age 2″ the other day that is tossed around with preemies.  As a note, preemies with many complications, who endure long hospital stays, who are born at 1 and 2 pounds do not usually “catch up” by age 2.  It’s a frustrating statement and one that confuses and really misinforms a lot of mothers out there who both have preemies and who do not.  Caden is nearly 18 months old and while we set goals for him and he is doing very well for his history, he will not catch up anytime soon.  I’m okay with this, as long as there is progress.  Caden is not my first so I no longer feel compelled to compare him to other children.  With Genevieve this was a very frustrating thing for me to watch my 16 month old not be able to walk, stand or crawl while the 11 month old next to her did.  But look at her now!  You would never even know that she was born prematurely.

I don’t see Caden following the same progress that my first daughter made, nor do I expect it.  In fact I can be incredibly frustrating to his therapists because of the vague and general “goals” that I set for him.  It’s not that I don’t hope for or expect them to happen, I just know that things happen on their own time and I would rather be pleasantly surprised then frustrated.  We don’t know if Caden will ever be “normal” or ever catch up, being so young there is still a lot in his future that is a wait-and-see game. I do have to say that it’s amazing watching a child really have to learn and work at the most basic of skills though.  I know that, as a mother of 2 other children, I took for granted how easy the learning process was for them.  From sitting up, to talking, to eating!!  Watching a child really struggle and try to grasp concepts that we do everyday without much thought is incredibly humbling.  I am really grateful to see it though.  To appreciate those moments when I can see the connection happening.  My 2 other daughters really get a kick out of it as well, they love to help him and demonstrate how to do things.  They are great teachers!

I should really know better then to have ever uttered the words “we’re done with surgeries for a while”.  I’ll back up a bit, so today was another Preemie Clinic appointment for Caden. It was for his eyes. I believe I explained a few months back that we were going to have to watch one of Caden’s eyes (his left) because the blood vessels in there were too tight. This is from his ROP (retinopathy of prematurity) which was pretty significant at a Stage 3, because of this there is scarring in his eye.  We were borderline surgery but his eyes didn’t get worse so thought we were in the clear.  The glasses never came as a big surprise but for some reason when I heard Dr. Larson (opthamologist) talk about his tight blood vessels a few months back all I thought was that if it got worse we’d have to have a stronger eyeglass prescription.  Thinking it through now, the scarring the ROP caused wouldn’t mean a stronger eyeglass prescription but surgery.  We certainly don’t want his retina to detach, worse case scenario.  So Caden will have to be followed every 3 months for… I have no idea how long.  If it does get worse then there will be surgery. It’s just a waiting game, same as everything else.  So I was a bit taken aback by the talk of “surgery”.  Only because I had thought that I wouldn’t hear that word for a few years.

Caden is doing wonderful though.  He’s pulling to a stand and cruising along the couch, no independent steps yet but it’s only a matter of time!  We are really laying on the sign language for Caden right now to try to get him to communicate with us.  Feb. 1st Caden is 18 months old and for sounds we have Ga and Ha.  No pointing or waving yet but hey, I’m not complaining because the little sounds he does make are the cutest in the world when he does it! He’s a social little guy, loves to smile and is such a stinker when it comes to feeding himself.  If it’s dry like a cracker or bread he’ll pick it up and put it in his mouth himself, but if it’s wet or mushy, say pears or cooked carrots, he won’t touch them. It’s also interesting that he won’t eat anything from our fingers.  It has to be on a spoon.  The drinking still escapes him, the poor boy has no idea what to do with a sippy cup whether it’s holding it or how to drink from it.  He just sits there with his mouth gaping open waiting for me to pour it in.  It’s really quite funny.

The job search still continues, we’ve added 2 in Florida and Pennsylvania to the list now.  I do apologize as yes we have Illinois in there as well and I forgot to mention it.  I’ve had someone ask me why so many states but really… the interview process is long and tedious and until we have an offer we won’t stop applying for jobs.  We’ve been talking to some companies since early Nov. and with the holidays it just made the whole thing even more drawn out.  Soon we hope, soon.

And a big HAPPY BIRTHDAY to my little nephew Jacob who turned 5 yesterday.  It’s exciting that Adessa and my nephew will be in Kindergarten at the same time this upcoming school year.  I always wanted cousins the same age as me but they were all much older. I also consider 5 to be a big birthday, because they are suddenly too old to be “toddlers” now.  I just consider it a crossing-over point where they are now big kids. 

Well, little Caden has some type of full-body rash going on right now.  Really no idea what it is.  We went to the doctor and because of Gena’s history of eczema she gave us some steroid cream but it hasn’t done anything.  So over the past 6 days we’ve been watching it spread.  Started on the back of his neck, then moved to his ears, then arms, then face, then sides and it just keeps progressing.  Doesn’t seem to bother him too much though. No fever, no runny nose, no cough.

Then there’s Gena.  She has a sore throat and cough that started 3 days ago.  No rash.  I’m thinking 2 totally unrelated things.  The rest of us are doing all right though.

We had Caden’s Preemie Clinic and his hearing tested okay! So thankful for that. I also was able to see Caden’s little girlfriend he had in the NICU.  Which was very exciting.  They roomed together nearly the entire time Caden was there for 4 months.  A little 24 weeker, 6 months in the hospital, little 1 pounder just like Caden. She’s tiny but doing fabulous.  Walking and babbling everywhere.  Just goes to show how much those surgeries have set Caden back but it was great to see them.  Incredible story too that I’ll have to share sometime.  She didn’t even know she was pregnant when she delivered her little girl.

On the job front, Daniel has so many interviews and phone calls going every day it’s like he HAS a job.  This is, of course, good news but no bites yet.  The problem being that a lot of companies want to wait until the first of the year to hire anyone.  Which is understable, but crappy all at the same time.  More and more people are losing their jobs every day, can’t tell you how many stories and people I know that have.  I like to see companies though who are actually making efforts to let people keep their jobs.  By enforcing paycuts, getting rid of company match 401k and just generally being responsible in these times to see that even more people don’t lose their healthcare and homes.  It’s encouraging to see some employers actually thinking out-of-the-box and not contributing to the economic struggle right now.  That there are other solutions then just slashing payroll. So kudo’s to those companies and their management.

Here are what some companies are doing to manage:

“In a recent interview with Tom Brokaw, President-elect Barack Obama urged business owners to “figure out ways in which workers maybe have to take a haircut, but they can still keep their jobs, they can still keep their health care and they can still stay in their homes.”

• Some companies like Toyota keep workers busy during downturns with training sessions or classes. Hypertherm reallocates employees to departments where there is a greater demand for labor. Others choose alternative cost-cutting methods like hiring freezes or shorter work weeks.
• Dean Gruner, CEO of ThedaCare, a Wisconsin-based health care system provider, instituted a no-layoff policy 18 years ago. To slash expenses in lean years, the company slows the hiring process and redeploys workers to other areas. “We can manage our staffing levels by being thoughtful about our turnover rate and redesigning the work that we do,” Gruner said.
• Jason Zickerman, president and CEO of the alternative board, a business coaching group, advocates this approach for all types of companies, even in times of financial hardship. Zickerman suggests offering employees shorter work weeks at reduced pay, encouraging employees to take sabbaticals or extend year-end breaks to avoid cutbacks. If 20 workers took two weeks unpaid at the end of the year, “you’re talking almost a full-time salary,” he said.”
• One of Utah’s largest employers, Intermountain Healthcare, has told its 28,000 employees it will not contribute its share to their 401(k) retirement funds next year. Physicians and midlevel managers will forgo small, end-of-the-year “thank you” payments this year in order to provide more for those payments to rank-and-file employees, Cowley said. Those bonuses range from $85 to $250.

Caden’s hearing test and health assessment for Jordan District Early Intervention was on Thursday. I didn’t even know we had an appointment but apparently it’s a yearly thing. Which is just sad that any doctor/therapist/place can call me up and I don’t even question why he needs another appointment.

So, after giving Caden’s history and health story for the (literally) billionth time we did the hearing test and it shows the exact same as the preemie clinic.  He’s still dragging in a certain frequency.  They can’t rule out mild hearing loss.

Funny enough, Dec. 9th Caden has yet another hearing test and an eye appointment with the preemie clinic.  Redundant I know.  I’ve learned though how poor the communication is in the medical community. I love my pediatrician because she knows and has told me that she basically acts as the single point-of-contact for Caden.  Meaning she has all the records/results/tests/diagnosis/surgeries/dates/etc. I go to Caden’s immunization appointments just to give her updates on what every other doctor has said.

No updates for a while, sorry ’bout that. Daniel’s mom was here for 10 days and it was so great to have her out here.  Gena and Adessa are still talking about it! Caden loved all the attention as well.

On the job front, we have a lot of interviews right now. Spanning the entire country.  Georgia, Florida, Arizona, Illinois and Utah.  So who knows where we will end up! This is really good news though considering that we know a lot of friends and aquaintances who have lost their jobs recently.  Scary.

Caden can now have solid food again!  He’s gagging on the bigger pieces but is doing okay. We are still giving him about 16-24 ounces of formula/whole milk a day through his feeding tube still but it’s just routine for him now. I did forget to post about one of his biggest accomplishments yet, he’s crawling.  Everywhere.  He’s just so exicted that he can chase the dog and his sisters.

Other good news is that after 6 surgeries in 1 year, we should be done for a while. We know that he’ll need some nose work, gums, orthodontics, tweak of his lips, and at some point we get the “break his jaw and move it forward” surgery… but those are a few years off. We still have some upcoming Dr. appointments (same ol’ same ol’). Dec. 9th is another opthamologist appointment. Also mid-December we have his other hearing test, for which we are sincerely hoping he will not have to get a hearing aid and that he’ll do okay there. Because the poor lil’ guy deserves a break! 

All right, a few updates first.  Caden still has another 1-2 weeks until he can eat solid food, per his plastic surgeon. He weighs in at 22 pounds and is 30″ long now. I had Gena’s parent teacher conference and she’s doing great.  She’s a talker in class though, big surprise with her Dad and I.  I always got in trouble for talking at school.

We went to pick up Caden’s glasses today and the guy helping us was so impressed with Caden.  We put the glasses on his face and he didn’t even touch them.  Just started looking around.  Usually kids try to rip them off and the guy said this was his first kid today that didn’t just scream when they put them on!  He was so impressed he started showing Caden off to all the other people working there.  It was funny and sweet.  Below you can see the pics of Caden in his new glasses!

The cutie smiling.

 He looks so much older!

Halloween was so fun!  And for some reasons the pictures I took on my camera have mysteriously disappeared.  Bummer. But I do have individual pics of all the kids so I’ll post those below.  We went trick-or-treating around the neighborhood with our little cousin Ethan.  It was kind of funny because we had 8 adults walking around 4 kids. It was fun to see their excitement over everything.

We also had Caden’s eye appointment today. The good news is that he doesn’t have Strabismus and doesn’t look like any evidence of lazy eye.  The funny news is that he does have to get glasses! He’s very near-sighted, it wasn’t that surprising.  So Daniel and I had to go eyeglass shopping for him today and I do have to say, his cuteness factor has increased significantly! Babies look so cute in glasses.  He’ll get the glasses at the end of this week so I’ll be sure to post pics.  His blood vessels in his eye are straightening out a bit too much, they like to see them a little lax, but the blood vessels in his left eye are a bit too tight.  It’s just something to keep an eye on, as the blood vessels tightening like this are a risk factor for retinal detachment and can really affect his vision.  We have a follow-up appointment in 3months again, so sometime around Feburary just to see how his vision is doing!