Coburn Kids

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.

We’ll start off with my poor lil’ 4 year old, Adessa.  On Thursday it was her turn at the Dr.’s office and she got her kindergarten shots. She was so brave!  She didn’t cry or let out a peep once. I’m so proud of her.  The next day and so on has been a different story.  Adessa had a bad reaction to one of the shots and you can see her red, tender and extremely swollen arm below. It’s hot and the skin across it is tight and shiny from the swelling it hurts her to move it as well:

Now in terms of the great news… OUR HOUSE IS UNDER CONTRACT!  It’s so unbelievable that we were able to sell it in just 1 month. Daniel and I have talked about how we knew that we were supposed to come out here to IL, that it was the right thing to do.  And we knew that our home in UT would sell or that everything would work out but you always have those doubts and fears. We close around June 19th on it and what a huge relief and blessing it is! We had neighbors whose homes were on the market for 1 year+, in fact we still know one or two that haven’t sold.

Daniel and I are very happy right now!

So I was reading a friend’s blog today, about her daughter calling her the worst Mommy in the world.  This was both my daughters Gena and Adessa the last week.  I was the worst mommy, Gena was never ever going to give me a Mother’s day present (I asked her to clean and she refused to pick up her mess). Then Adessa had an accident yesterday and refused to change. So I’ve won the “worst Mommy in the world” award twice in 5 days. Though yesterday at the Doctors they both composed songs about me being the best mommy in the universe so all is forgiven apparently.

What made me write about this though is my 4 year old and what she told me. This is a serious case of a spiritual lesson gone horribly wrong!!  Adessa threatened that when she grew up, just to make me mad, she was going to smoke!  Wait… what?  The lesson 2 weeks ago in primary was about the Word of Wisdom.  How we should take care of our bodies and never smoke, never do drugs, eat healthy, exercise.  All the good stuff.  Except now my 4 year old daughter is threatening to SMOKE when she gets older if I don’t let her have her way. This is the worst way to punish me in her eyes I guess. Talk about a Primary lesson turned upside-down! I’m terrified of this girl when she becomes a teenager.

I had a wonderful Mother’s Day.  It started on Saturday when I went to the salon and got my hair done.  The on Sunday Genevieve gave me a beautiful plate and Adessa and Daddy gave me storage containers for my China that I’ve been asking for.  Daniel made me breakfast and later in the evening we went to my Sister-in-law’s house for a great barbeque.  The kids had a blast playing with their cousins and it was good times all around.

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.

Starting on Friday, the girls were driving me crazy wanting to do something so I told them to get their swimsuits on.  Not to go outside though, considering it was 50 degrees.  You see, we have a big bathtub.  Huge.  So I told the girls they could swim in it. They were really skeptical but ended up staying there for 2 hours. They loved it!

Notice that Caden is holding a doorstop in his hand.  He takes them ALL off and walks around with them.

On Saturday we went to the Brookfield Zoo!  The girls had a blast and so did Caden. It was nice and cool so was wonderful to walk around. Pics below:

Caden’s very first ride!  We had to pry him off at the end, he absolutely loved it.

Ahhhh, look at how happy they all are!

In the kids Zoo brushing the goats.

Looking up at the T -Rex in the Dinosaurs Alive exhibit.

In the Kangaroo pouch.

Gena hugging the giraffe.

On Sunday the girls wanted to ride their bikes so we headed outside in the backyard to ride around the pond.

Gena!

Adessa! 

And last but not least, here’s what Caden was doing while the girls were riding their bikes.  The pantry was left open… he started helping himself.