Coburn Kids

Every single day it’s been raining.  We’ve had 2 days of sunshine and the rest has been cold and dreary.  I do have to say how green everything is though, after living in UT and TX the green is a nice change but the weather is depressing.

Trying to get Caden some new therapists is proving the nightmare I heard it was. I was told back in UT by some ladies that to get services started again it would take 2-3 months in Chicago.  I talked to his wonderful therapists at the time and we hoped this wouldn’t be the case since Caden clearly qualifies and has been in Early Intervention since birth. Apparently not.

On Tuesday I was told Caden was having his evaluation for EI services, turns out the woman was only coming out to go over paperwork.  It took all of 20 minutes because I all ready had filled out all the paperwork beforehand.  Now it seems it’s going to take 1-2 weeks for them to even call me to set up his developmental screening.  And who knows when that can take place because apparently they are swamped and there are no openings right now, there was even talk of a waiting list, so his screening could be 2-4+ weeks away.  Once the screening is done by the Occupational Therapist, the Speech Pathologist, and the Developmental Specialist, from that point they state that services can take up to 45 days to start.  So we are indeed looking at a 3 month wait to start any type of therapy with Caden because of the bureaucracy. Despite the fact that he just had a developmental screening late Jan. and we have a Family Service Plan all ready.  Ugh.

Caden is so far behind in speech, it is absolutely painful to lose 3 precious months waiting for paperwork to be done. I think I’m going to explore private speech for him and see what our new insurance can cover.

So we have 2 very important milestones to share about Caden in the last few days.  First off, his first haircut!  We buzzed his little head, because his hair is so fine and all-over-the-place he looked like a wild child.  Now he looks very handsome.  You can see the undertaking below:

He was such a good little boy and sat there the whole time patiently.

Here’s a close-up, you can see how his hair stuck out all over.

Next is the most exciting news, CADEN TOOK HIS FIRST STEPS!  He’s been practicing all this week standing up and moving his little leg forward.  Well today he did it, he took those few steps.  We caught it on video below while we were watching a movie and cleaning, and I apologize for my baby in a diaper, he likes to take his pants off any chance he gets! It’s a new skill.

First off, cute random pic of my kids to the left!

We had Caden’s Occupational Therapist and Speech Pathologist here today and we talked with them some about Caden’s left-sided weakness. When trying to walk with him he’s dragging his left leg, and since his thumb x-rays came back structurally okay we think his left hand and not doing a pincer grasp correctly either is all connected. If you recall, when Caden came home from the hospital he couldn’t turn his head to one side because of some tightness and weakness at the same time. This could be because of some mild cerebral palsy, and just to clarify since there is a lot of misconception about cerebral palsy I’ll give a definition: a broad term that describes a group of neurological (brain) disorders. It is a life-long condition that affects the communication between the brain and the muscles, causing a permanent state of uncoordinated movement and posturing. So it’s a catch all diagnosis that doesn’t necessarily mean any type of mental handicap (it can though) but is rather more typically related to the muscles. If this is the case we wouldn’t get a diagnosis for a few years because it would appear to be mild and we’ll just have to wait and see what he’s able to do in the future. We never really held any hope for our son to become coordinated enough for sports anyway, since his eyes and risk for retinal detachment would actually be more concerning.

We’ve got Caden’s swallow study scheduled for April 9th. His Speech Therapist is going to try and make it up there with me as well to observe it. It should be amusing, trying to force feed a child who hates drinking to swallow some chalky not-so-cleverly-disguised-liquid that is suppose to taste like a variation of cherries or bubblegum. I mean, for a regular child who could drink, it would be difficult. Add in a child who refuses for liquid to touch their lips most days… and I guess I won’t be dressing Caden in any cute/good clothes that day! If you are curious as to what a swallow study is here’s a great explanation below:

What is a swallow study?

A swallow study (also known as a videofluoroscopic swallow study) is a procedure used to test children experiencing difficulties with feeding and/or swallowing.

* The swallow study is performed in the medical imaging department with a speech-language pathologist and a radiologist. Special equipment is used to provide a “moving x-ray” of the child’s swallow.
* During the test, the child is placed in a chair next to the x-ray equipment. The speech-language pathologist feeds the child a variety of foods mixed with barium. The barium makes the food visible during the x-ray.
* The speech pathologist closely watches the x-ray to see how the food and drink move through the mouth and into the esophagus during chewing and swallowing. She also watches for any signs of aspiration (when the food or liquid goes “down the wrong way” into the airway).

With Caden we are also going to be watching his nasal area as he is still getting food coming out of his nose every time he eats.  He may have a fistula or other hole up there so that will be informative.

Not much to report.

Job search continues, it’s been 5 months! Hard to believe. For updates on the states, since my mind has melted with the sheer number of companies and people: North Carolina, Illinois, Florida, Utah, Washington and Texas are the contenders right now.

Caden continues to learn more signs. No new sounds yet, still just Ha, Ga, Ge and… that’s about it.

Parent/Teacher conference for Gena went well. Her only struggle is handwriting, but she is a full year younger then the other kids.

Adessa loves preschool, loves her teacher, loves her friends. Though she is mad at her preschool best friend Peyton for telling on her because she wasn’t sharing. Preschool drama, I love it.

All right, just to show all of you how close Caden is to walking all by himself, I uploaded a video of him pushing a chair around in the kitchen.  He’s not walking independently yet and he’s still a little shaky but he was having such a grand time I had to show it. He’s 19 months old and I think… I think in a few weeks we may get those first steps all by himself!!

We’ll start with Gena.  Daniel had a phone conversation with Gena’s principal today at the school and they brought in a bunch of kids to find out what happened and who exactly it was. They were able to identify the boy and they talked to him.  The custodian also went out to the playground and filled in the hole in the woodchips that they had been playing in. Hopefully that’s the last of the incident.

On Friday I went up to the hospital with Caden and got his thumb x-rays done. The bones look fine and Caden’s odd lil’ thumb is actually “soft tissue swelling”. Make of that what you will.  Since he’s had it since birth it’s not really any swelling that will go down but just the way his thumb is and will always be. A little odd and off-kilter. This doesn’t help us figure out why he’s not using the thumb correctly unfortunately.  So we’ll wait and see.

More on the egg allergy front, it seems that Caden is really truly highly allergic to eggs.  I just spoke with his doctor because last night, when my parents were watching the kids while I took Daniel out for a birthday celebration, they gave him his dinner (egg free) and some fruit.  The rest of the family had some hot dog buns (contains egg) and a fruit salad with mayonaisse (contains egg) and my mom mentioned that Caden’s face looked more red and he had the watery eyes again.  This morning even his face was still red, he had watery eyes, runny nose and more.  So I called up his pediatrician and her first words were “doesn’t surprise me, he tested really high for it.”  We have to keep even anyone that’s cooked or touched eggs away from Caden and they have to wash their hands and face before they can kiss him, touch him, etc.  She even recommended that Caden not be in the same room if I prepare something with eggs.  Wowww. Food allergies are serious business.  It would be rare for eggs to cause an anaphylaxis reaction, but the more exposure he gets to eggs the worse his allergic reaction will get.

Found interesting information that kids with egg allergy can become egg tolerant, but the rate that children are developing tolerance to eggs is slower than in the past when it was thought that most children outgrew egg allergy by age 5 or 6. An egg allergy study published in December 2007 stated:

• 4% of children outgrew egg allergy by age 4
• 12% of children outgrew egg allergy by age 6
• 37% of children outgrew egg allergy by age 10
• 68% of children outgrew egg allergy by age 16

They found that a kid was less likely to outgrow the allergy if they had high IgE antibodies when blood tested for egg allergy (strike 1 for Caden), if they had other atopic disease like eczema or asthma (strike 2), or if they had other food allergies (we’re good here). So we might be in this for the long haul or be lucky!

Dr. Lantz, Caden’s pediatrician, called me last night around 8pm with the results of the allergry test.  Turns out Caden is highly allergic to eggs.  Which could explain his eczema, his constant runny nose, his watery eyes and more. So for the next few months we have to take out eggs entirely, which includes so many foods!  We went through our cupboard and 1/2 of his food has eggs in it.  Most pastas, any cookies or cakes, some breads and crackers, most of your breakfast foods such as waffles, french toast, anything breaded like chicken nuggets, pretzels, muffins, salad dressings, some soups, the flu shot and more.  So this will be quite a new experience. His doctor is going to be sending me some information but she told me to check on the web in the meantime and I found a great article on Kidshealth.org: Egg Allergy including a handy little print out to keep in your wallet/purse with the ingredients he should avoid. There’s even entire products dedicated to egg allergies such as t-shirts, magnets, luggage tags, and stickers.

Both my girls were in bed by 7:30 PM tonight!  We couldn’t find Gena and there she was dead asleep in bed.  And Adessa came and asked to go to bed. Gena’s got some allergies or a cold because she has the sniffles and is, clearly, tired and doesn’t feel well. Having them want to go to bed so early was a nice surprise though.

Caden’s Early Intervention evaluation was today as well, they do it yearly. Let’s give Caden’s developmental age in months below:

Gross Motor (crawling, walking, etc.) – 12 months

Fine Motor (pincer grasp, picking up small objects, etc.) – 12 months

Cognitive (responds to name, imitates) – 10 months

Language (speech) – 6 months

Self-Help (feeding self, pulling socks off) – 15 months

Social/Emotional (smiling, separation anxiety) – 10 months

So he has an average developmental age of about 10.8 months old. Not unexpected, he was right where I thought he would be in all areas.

Very exciting news though, Caden is starting to do sign language!  Daniel and I are ecstatic about this because he’s finally starting to communicate.  So far he can do ‘more’, ‘eat’, and we believe ‘Daddy’ and ‘all done’. This is huge, it’s the first sign that he’s beginning to comprehend and understand.  It’s completely amazing to see a child that can not say a single word actually tell you something he needs. Needless to say, Daniel and I are really pushing for more sign language and even Gena and Adessa are learning and helping him. We have some kid videos and they watch some on the internet to learn. They think it’s cool too that Caden is interacting with them and they have a “secret” language, as Adessa put it.

In regards to his upcoming appointments, his Geneticist appointment is 8 months off.  Apparently the first opening they have isn’t until Oct. 17th! It’s really not something we need to rush though so I’m not concerned. I couldn’t get his Swallow Study appointment in today, waited on the line for almost a 1/2 hour, so I’ll have to try again tomorrow.

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.