Snowed In... Again

For the past few weeks, we have been enjoying normal and above normal temperatures. Then Thursday, Old Man Winter decided to inform us he was still alive and kicking.

Due to therapy being the same time as the ice storm came through, I canceled PT since I wasn't about to drive to Broken Arrow. (No, I don't care if I own an all wheel drive vehicle. I don't do ice.)

Friday, the snow came.

And kept coming down.

The snow continued all day. And this is what we woke up to this morning.

Aiden and I are both suffering from cabin fever. He's refusing to take a nap and therefore falls asleep at 6pm and wakes up before 5 am. We may venture outside today as one of his photographers is holding a contest and the winner gets a free photo shoot session.

The Wheels on the Bus Go Round and Round

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A Milestone Reached

We've been working really hard on sitting at the table to eat without throwing things.

Every morning when I take Aiden to school, he takes breakfast with him. It's part of the morning routine in class. All the kids eat breakfast in the classroom. I don't want Aiden left out of this. So, he takes cereal with him. If he throws his cereal on the floor, he loses his breakfast privileges.

Today, Aiden decided to surprise me once again.

For both breakfast and supper tonight, Aiden ate his food without throwing. He drank from his cup without throwing it. As he took a bite, he put his fork back on the plate or bowl. He sat his cup back on the table without it tipping over.

Calling for Prayers

If you could spare a few prayers in the next few days....

Addison from Finding Normal and Wee E from Elliot's Expeditions are two very special kiddos to me and to Aiden. They are both spending the night in their respective PICUs tonight.

I Am the Child

I AM THE CHILD

I am the child who cannot talk. You often pity me; I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, and oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire; desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

Please Don't Park There

Every morning when I take Aiden to school, I park the truck in a parking spot. I get out. I unload his gait trainer. I unload Aiden. And Aiden walks into the school by using his gait trainer. We don't have a handicapped parking permit. I park in a regular parking spot. Aiden needs the practice.

The school Aiden attends has 3 handicapped accessible ramps. Due to the gait trainer, it is necessary for Aiden to utilize one of these ramps. The gait trainer is on wheels and he is not capable of jumping up a curb. Sorry, just isn't going to happen.

However, every morning, the ramps are blocked from Aiden going up those ramps. All three of them. Other parents are unloading their children - all of whom walk. Aiden is forced to stand in the middle of the drive and wait until he can go up those ramps. And some parents don't pay attention since they are in a hurry to get to where ever it is they are going - be it to work, another school, the grocery store. They drive around the other cars sitting there in idle while the child occupant disembarks.

The problem with this is that there is a SMALL child standing there waiting to go into the building himself. And a few times, the parents who are impatiently leaving the parking lot can't always see him.

This morning, after I dropped Aiden off in class, I stopped by the principal's office and asked if it were possible to send a reminder notice home with the kids, asking parents to remember that those very same ramps they park in front of are used to accommodate children and adults who NEED to use them.

But everyone, please remember EVERY TIME YOU BLOCK THOSE RAMPS, YOU PREVENT SOMEONE FROM USING THEM. DON'T PARK THERE!

Rock On

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Bubble Gum in the Ears

Today was Aiden's hearing aid fitting. I hoped he would take a nap before the appointment, but he didn't until we got in the truck and was on the way to the audiologist's office, which is located 45 minutes away from the house. Once we got there, Aiden woke up and was happy playing in the lobby.

When we first made the appointment, I asked a friend ( "JoJo" ) who has a degree in SLP to attend as a parent advocate. Two minds are better than one and she would ask the questions I wouldn't know to ask. And she would know how to read the audiology report with the graphs and stuff. While I was filling out the new patient history, she was taking a history of Aiden. (It's a long story, but up until a few weeks ago, she had not met Aiden and she is going to fill out a "report" for both her and my records.)

We went back to the little exam room, where the audiologist went over the results of Aiden's hearing tests in November. And she readied the exam table with all the things needed to fit Aiden for hearing aids. She made two little balls of string and stuck one into each of Aiden's ears. He wasn't too happy with the process. Chris and I were holding Aiden still while JoJo was occupying Aiden's head with puzzles and lights.

Then came the bubble gum.

Not real bubble gum. A pink silicone rubber stuff that she injected into Aiden's ears. Aiden's didn't like it and tried to remove said bubble gum. However, we had to wait for the stuff to stiffen up and mold to his ears.

In order to keep Aiden from pulling the goo out of his ears, I had to give him the iTouch with the Imagination Movers music playing and opened up the Dice application that Aiden loves to play.

I got to pick out the colours I wanted the hearing aids made. I chose yellow and blue swirl. Of course. Gotta show our T21 pride LOL! :D

So, now we wait. We wait for our primary insurance to deny the coverage. Then another claim to our secondary insurance which will cover the hearing aids. Then we wait for the hearing aids to be made.

Pacer Check Update and Some Imagination Moving....

I ended up having to take Aiden to the Device Clinic at the hospital to get his pacer check. The appointment was with Aiden's pacer tech, Randy, but Randy got called to the hospital because the hospital pacer tech is out sick. So, instead of seeing Randy, we saw Brad and one of the nursing techs.  Aiden is the first pediatric pacer check done in the lab. Most of the kids get their pacer checks done in Dr. Pediatric Cardiologist's office or have the pacer monitor at home. What takes 5 minutes at home, takes 15 minutes in the office. But I get the results immediately....

Aiden has not had another episode of v-tach since the one in November that his home check picked up on. We know it happened on November 27 (Black Friday) at 3:27pm while we were out doing shopping. The problem is that Aiden is asymptomatic - meaning that he doesn't show any symptoms.

After the check, we went up to Dr. Pediatric Cardiologist's office to say hi to the office ladies. Aiden walked in using his gait trainer. He is doing so much better without the basket seat. He will actually stand completely upright to walk in it now. (See, I may be a "Mean Mommy" but he's doing really well considering. LOL!) Kristi, the check-out receptionist asked how much Aiden was weighing now. Ummm, don't really know since we haven't seen a doctor in several months - knock on wood. So, I asked if I could get him weighed. We went back to find Nurse Laura to weigh Aiden and Dr. Pediatric Cardiologist was there also. Normally on Thursdays she is in the cath lab, but she had an appointment with a patient and happened to be waiting on the patient.

I told her what the pacer check revealed about no more episodes, but she still wants Aiden to see Dr. Pediatric Heart Electrician in February.

Aiden weighed in at 23lbs 4oz, which is up from the last time we saw Dr. Pediatric Cardiologist in September. This now puts Aiden in the 25th percentile for weight on the T21 growth chart. He hasn't been measured length-wise in a while either, but the child is getting taller. He now wears 24 month pants to fit his legs.

After weighing in, Aiden went straight into an exam room. And waited for Dr. Pediatric Cardiologist to come in. He didn't want to leave either. He expected to examined. He even tried shutting the door while waiting.

My child has spent too much time at a doctor's office if he KNOWS the routine.
 
After we left the office, we headed over to Grandma Susan's to spend time before we headed to physical therapy. Instead of having therapy at the house, we opted for this week's session to be held at the office in their newly decorated therapy room.

Mom is seriously wanting to revamp the garage after seeing this room!

They have a platform swing hanging from the ceiling! OMG! I WANT ONE!

Aiden stood up on it and got it swinging back and forth! We so need one in the house!


Then Aiden climbed some stairs and slid down the foam slide. And played with the HUGE wall mirror. They need to add a bar to the mirror, so that the kids can walk along the mirror. The owner of the therapy place came in and we discussed it. She is going to have a mirror put in.


And then, Aiden discovered the play kitchen area.

The child spent the majority of his therapy time, standing at this thing. Seriously! Apparently, the child absorbs information like a sponge.


 He cooked and did dishes and put food in the microwave.He put "pots and pans" into the oven! He even made a swooshing sound to simulate water running in the sink!

One of these days (in a few years of course), we'll be watching Aiden on the Food Network!

Aiden's Second Pacer Check

Didn't quite go as planned. The machine quit working. I called the local clinic and told them that during the reading process, it would get to the 3rd stage, then the pacer light would beep. Then it would read again. Then the pacer light would beep again and the machine would turn off.

The lady at the pacer clinic had me hold a folder wash cloth between Aiden and the wand. And it still shut off. (Now keep in mind, that we tried before school and after school with the same results.) So, I called back to the local clinic and she gave me the number to the manufacturer's support line.

While I was on the phone with them, she had me try to read it with her on the line. The machine beeped twice and then shut off.

She's sending us a new pacer reader via UPS and we're waiting to see what Dr. Pediatric Cardiology and the local clinic want us to do.

Milestones and Independence

Friday, Aiden had a physical therapy session in which his therapist and I discussed a concern I have been having - the gait trainer.

Children with Down syndrome tend to take the easy road. Why should they learn to do something another way if the way they are doing it works perfectly well in their minds. Well, Aiden is no exception. When it comes to the gait trainer, Aiden knows he has mobility, but it really wasn't making him work. Instead, he figured out he can sit in the basket seat and move his legs. Well, that really isn't training Aiden to push through with his legs and hips.

I removed the seat.

And put it away.

Aiden doesn't have the luxury of "duck walking" anymore.

At first he just stood there in his gait trainer looking at me like "WTH have you done?" He wouldn't move it. He wasn't about to think about walking in it. I made it harder for him, on purpose.

Bad Mommy.

I admit it.

I WANT that milestone!

I gave him a goal of one year in the gait trainer. (I know realistically, one year in the gait trainer is probably pushing it, but hey... I'm the Momma. He'll probably be using it well into the summer also, but at least he's HAVING to work at walking and using his own strength.)

This morning, he went back to school. And I took the gait trainer, sans the basket seat, out of the back of the truck. And I put him in it.

Aiden's first reaction to his gait trainer is FREEDOM!! And he wants to run. However, he didn't have the safety of the seat to keep the gait trainer from taking off without him. And he learned this very quickly, when he started to fall forward. He looked at me like I was evil. Fortunately for his face, he caught himself and corrected his positioning. He had to do this a few times before he realized "Oh, this is different!" I did adjust the drag on it so that the gait trainer could not take off too fast without his following suit.

He did very well walking up the ramp and into the school. A few times he slipped, but each time he corrected himself without assistance. I told him he had to go slow and think about what he was doing. He made it into class looking like a big boy.

And his face is free from scratches, bruises and blood.

Tonight, I was in the kitchen cleaning up. Aiden comes in as soon as he hears the dishwasher open and helps take dishes out of the dishwasher. For whatever reason, he feels it necessary to help with this chore. I'm not complaining as before too long, this will be his chore and he's not going to like it then. LOL! Well, once I got to the point where his help was no longer necessary (and I removed the utensil basket from said dishwasher), Aiden went over to the pantry shelves. And he came back with a Kool Aid Jammer. And he handed it to me.

This is the first time Aiden has self initiated something to drink! So, I popped the straw into the container and handed it back.

More Whys of Having a Toddler and Potty Talk

 Why does Mommy spend an hour cleaning the toddler's room and finding toys only to have the toddler go in right behind her and destroy the progress?

Why does the toddler feel the need to wake Mommy up at 6:30am by yelling "UP"? (Though it is better than kicking the wall...)

Why does the toddler run to the kitchen the second he hears the dishwasher open?

Why does the toddler wake up from a nap within 5 minutes of Mommy laying down for one?

Why must the toddler put 1 + 2 together and get dirty diapers belong in the toilet?

Why can the toddler sit on the toilet to go potty unaided, but refuse to stand up by himself?

Why does standing up at the fish tank for more than 3 minutes cause the toddler to poop? (Seriously, TWO DAYS IN A ROW!)

Finally! A Date Has Been Set

Aiden will go in for his hearing aids on the 19th! I called the hearing aid place and made the appointment today. The receptionist didn't have the fax with the referral, but she made the appointment anyhow. The fax may have been sent to the other office and not the new office, so she is going to check with them on Monday (they closed at noon today). If not, she'll call over to Dr. Pediatrician's and have the referral refaxed.

Arctic Blast

Have I ever said I HATE winter? Apparently friends from Canada have decided to share their winter with the rest of North America.

We still have snow from Christmas. It's patchy, but it just won't go away either. It's been too cold to melt. The temperatures haven't been above freezing since then. And it got colder. School has been canceled for the rest of the week due to the sub-zero temperatures. We are under a wind chill advisory (more like warning) since the expected wind chill factor will be 0* or less (-20*). Seriously? Who lives in these types of conditions? Penguins in Antarctica!? I'm not a penguin...

Aiden has been forced into a long sleeved onsie since he has decided the clothing optional philosophy is the way to go. The child can be out of a shirt in under 30 seconds and cries if I try to put one on him after he's removed it. Since our onsie supply is limited, I am trying to do laundry today. Trying being the optional wording. The washer and dryer are located in the garage and the washer keeps freezing up. I had to put a space heater in there just to keep it running long enough to wash 2 loads of laundry.

Every room in the house has either a humidifier or vaporizer in it. The steam from filling up the humidifiers and vaporizers freeze immediately upon hitting the windows. Honestly, I think my deep freeze is warmer than it is outside.

And in other Aiden news....

We finally got a referral to the hearing aid place. Our primary insurance doesn't cover hearing aids, so we had to be referred somewhere else to use his secondary coverage. Well, the audiologist at Dr ENT didn't send the paperwork to Dr. Pediatrician. So I spent a lot of time on the phone with the audiologist, the insurance person at audiology, the hearing aid specialist and the pediatricians office. I spent at least 30 minutes on the phone with the audiologist getting the paperwork faxed over to the pediatrician's office. Today the nurse from Dr. Pediatrician called and said that they finally got the referral faxed over. Hopefully, sometime next week, I can get Aiden in to the hearing aid specialist and get the ball rolling on Aiden finally being able to hear.

To Nap or Not to Nap....

Aiden is coming to the conclusion that it is not necessary for him to take naps anymore. Every other day, he refuses to take a nap.

Yesterday, we had our final Christmas dinner (due to the heavy snow fall and everyone's schedule, it was postponed). We tried numerous times to get Aiden to take a nap since I really really really did not want a cranky 3 year old while trying to eat. Aiden had other plans. He sat in his bed for 2+ hours playing with his piano, GloWorm and reading a book.

I got him out of bed, dressed and loaded up. Halfway to our destination, he decided that was a good time to take a nap. At 4:45pm. Mom had other plans. I turned his favourite music on, the Imagination Movers. Aiden stayed awake.

And he stayed awake through dinner. We made it home, turned the Imagination Movers on the television to get him to stay awake long enough to get ready for bed. Once the Movers were off, I gave him his nightly milkshake and put him to bed. This was at 8:30 last night. And he slept all night, but woke up about 6:30 this morning.

Today, I was tired, so I took a nap. Chris had attempted to get Aiden to nap for 3 hours. Aiden obviously thought differently. He stayed awake playing. When I woke up from my nap, Aiden crawled up me and sat down in the recliner. Chris left to go do some shopping and return a redbox movie (Have you seen these? They are DVD vending machines. $1 per movie/per night.)

Not 15 minutes after Chris leaves, Aiden sits still long enough to start yawning. And before I knew it, Aiden was slumped over leaning on me falling asleep. I picked Aiden up and took him to lay down in his bed.

Happy 2010

(I tried and tried and tried to get him to wear the glasses. I really did. He wasn't having any part of it. But he went all out on the champagne glass!)

May your new year be full of blessings and good health!