A is for Aiden

CHD Awareness Day 1

2012-02-07T19:48:00.000-06:00

Today marks our 5th Congenital Heart Defects Awareness Week. 5 years ago today we were 8 days out from Aiden's first open heart surgery for Tetralogy of Fallot and a complete A/V Canal Defect.

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.

It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.

We spent the day today at the very same hospital where Aiden underwent his OHS. Aiden had dental surgery today. While the hospital has gone some major renovation since then, the OR has remained the same. The same exact painting of Snoopy and the Peanuts gang is still on the same wall. I was asked this time if I wanted to walk Aiden back - completely back - to the operating table while he was placed under general anesthesia. I declined.

I still remember vividly the emotions of handing my 5 month old baby to a stranger. A stranger who was going to be with my child while his tiny heart was placed in the hands of a surgeon I had met only the night before. The memories of spending 8+ hours in a tiny waiting room while my baby laid on a table fighting for his life.

The anxieties came back being in that room with Snoopy. Chris walked back with Aiden in my place. For that I am grateful. He sat there and held the gas mask while Aiden went to sleep. There was no way I was able to do that myself.

The staff asked if wanted to know where anything was. After spending 5 and a half weeks in that hospital, I know it backwards, forwards and sideways.

There are floors I avoid, one in particular - the 8th floor. Which used to be PICU. I don't know if it is still the same floor, but I avoid it anyhow. The dental clinic is located on that floor, just in the new part of the hospital. I can totally avoid the patient rooms and try not to think about my child laying in his room while machines kept him alive.

Today was just a simple procedure, complicated by Aiden's previous heart history. He had total tooth restoration since he likes to grind his teeth. One root canal, extraction of a molar (his first tooth BTW!) a few crowns and fillings and 4 hours later....

Cardiology also got to play around. Dr. Pediatric Heart Electrician wanted to do a sedated echo while Aiden was under.

Aiden wasn't too happy coming out of his drug induced nap. His mouth was full of blood and he has to drink before being released. Which caused the child to swallow all that blood and then promptly projectile return it back. Yes, that was lovely. 2 hours in recovery, a dose of Zofran, and a sippy cup of Sprite finally agreeing with the child and we were sent happily on our way.

He spent the 3 hours of driving time watching Chuggington in a stupor.

Alopecia Areata

2012-01-24T09:14:00.000-06:00

A few months ago, I took Aiden to Dr. ENT and his wife happens to be a dermatologist. And I asked about her. She wasn't accepting new patients at the time and was only working part time. We touched on the issue of Aiden's alopecia.

Fast forward a few months.... Chris makes an appointment with a dermatologist in another office. And we went yesterday. While there, I asked if this dermatologist saw children, to which she said yes and we discussed Aiden's hair loss.

Fortunately, she does see a lot of children with Down syndrome who also have alopecia. And the pattern of hair loss that Aiden experiences is common. Unfortunately it is the second hardest to treat - next to alopecia totalis - but there is a treatment.

The treatment for alopecia areata (which the doctor says actually does work) is a series of steroid injections in the scalp. Granted, while she said it does work, the problem is that the back half of his head may not recover hair growth.

Do I really want to subject the child to injections? Not really, no. While I do feel for the child as he gets older and risks the eventual total loss of hair, I don't want him to have to go through this. This will have to be a decision he makes as he gets older.

Are Kids With Down Syndrome on the Road to Extinction?

2012-01-24T09:13:00.000-06:00

Are Kids With Down Syndrome on the Road to Extinction?

Bringing in the Holidays with a Bang

2011-12-10T13:13:00.001-06:00

The week before Thanksgiving, I had decided that I was going to get my license to be a Zumba instructor. However.... I blew out my ACL in my left knee and well.... I haven't been to a class in 3 weeks and Monday I have an appointment with the orthopedic surgeon.

Last week, Chris was complaining of his ear aching. Then he said his eye was twitching and had difficulties getting a suction with a straw. I made him go to the doctor on Tuesday, only to be diagnosed with Bell's palsy. This has caused a lot of stress and strain on an already fragile situation with his family. I had already decided that Aiden and I will not be attending holiday festivities with Chris's family and this just re-affirms my decision. I'm tired of being blamed for other peoples actions.

The Christmas tree went up today. I went with the big rotating tree this year instead of the little tree. I will not, however, be utilizing the "rotation" function as Aiden attacked the tree twice while I was decorating it. The presents will not be going under the tree until Santa has brought them on Christmas Eve.

I volunteered to take Christmas pictures for Aiden's special education class. For the most part, I am happy with how they came out. All but 2 of the children were cooperative. Aiden of course was a camera hound and wanted his picture taken over and over again between the other children's pictures.

These were our selections for the Christmas cards this year.

There is a full eclipse tonight. I will attempt to stay awake long enough to take a few pictures. Does anyone else plan on viewing it?

Happy Thanksgiving!

2011-11-24T06:54:00.000-06:00

Shake Rattle and Roll

2011-11-08T20:03:00.000-06:00

November is starting off with a bang. Thursday, we left the house at 5am for ear tube surgery. Aiden was the first one of the day. The intake nurse mentioned us staying the night... um, okay. Apparently, Dr. Happy Drugs went ahead and reserved Aiden a suite at the Panda Palace. Shortly after 7am, the surgical nurse came in and retrieved a sedated little boy. 20 minutes later Dr. ENT was calling and letting us know that all went well and follow up in a few weeks. We've been through this so many times now that he doesn't even bother coming in after surgery and talking to us face to face. We went back to recovery around 8am. There was a little girl also in recovery for the same surgery, however it was her first ever surgery, and she was not a happy camper. Aiden on the other hand, really didn't care. Once we were back in his room, the nurse started going over aftercare stuff. Chris and I both stood there and said everything she was telling us word for word. She asked how many times we had done this. Chris answered "Oh, 4 or 5 now" and the nurse asked if we were getting a discount.

After surgery, we went to breakfast at Braums and then did a little bit of shopping. Aiden was starving and ate a side of scrambled eggs, bacon and some hashbrowns. Since he was doing so well, he went to school on Friday and had OT after school.

The weekend was supposed to have been uneventful. However Oklahoma sits on a few fault lines. And we had earthquakes. Not the typical magnitude of 3 or less we normally have and no one feels. Nope, big ones. The record earthquake in Oklahoma was a magnitude 5.2 in El Reno (western OK) on the Meers Fault line back in the 50s. Was being the operative word here. Saturday morning, I woke up and watched the news in which they informed me that we had a 4.7 shaker that I apparently slept through. Okay fine, didn't feel any after shocks the rest of the day. Then I went to bed....

Did you know that an earthquake starts off sounding a lot like thunder? Then it gets freaky sounding. Oh crap, here we go. Now keep in mind, I know that OK has earthquakes all the time. I keep track of what the United States Geological Society posts. I'm like addicted to their website. I also knew that we weren't scheduled any thunder storms over the weekend.

The next thing I know the equivalent of a freight train is passing through the bedroom, right next to the bed. I get up, pull up the USGS site and lo and behold an earthquake of 5.2 unofficially struck. How the child managed to sleep through it is beyond me. A few minutes later, the seismograph recording had been reviewed and it was upgraded to a 5.6 making it the largest earthquake in recorded history for Oklahoma. That was also time change night, where we were supposed to get an extra hour of sleep. Pretty sure that didn't happen for most people living in the states that felt it - TX, KS, AR, and reports some in NE.

Sunday night was pretty quiet, but Monday night brought us another earth moving experience and a few tornadoes, which yes the child managed to sleep though. Oklahoma is now officially the home of the Quakenado.

Personally, I am ready to move.

Get It Down: 31 for 21 (Day 31)

2011-10-31T06:00:00.000-05:00

A Fitting end to Down syndrome Awareness Month....stolen and altered: When you were but a tiny speck deep within my womb, something happened to your cells as life began to bloom. A 'chromosomal abnormality' is what the doctors say, but you are EXACTLY what I asked for each night as I would pray: "Dear Lord, send me a happy child who will not grow up too fast, (for I love the joys of childhood & I wanted that to last) send me a child who sleeps all night & doesn't often cry, a little boy with endless love & a willingness to try." That little extra chromosome, that number 21, gave me all I ever wanted, YOU, my precious one! Happy Down syndrome awareness month! I love you, Aiden Wyatt...JUST THE WAY YOU ARE!

Get It Down: 31 for 21 (Day 16)

2011-10-16T19:53:00.000-05:00

Today was our Buddy Walk Day. OMGosh! It was hot! 90*+ temperatures and a ton of people. But it was fun.

This year, a few things were different. Instead of being at one of the local area high school tracks, it was held at a park due to construction at said high school. Pre-registration (if you didn't attend the kick off party) went a lot more smoothly, I think. We did have to wait until the ribbon cutting ceremony to enter the park, but luckily, the Green Country Classic Mustang Club was nice enough to let us sit under their tents while we were waiting.

Once inside, instead of a DJ, there was a live band, who was actually pretty good. We saw a bunch of people we haven't seen in a long time. Janae, Aiden's Make-a-Wish wish granter was there and remembered the little boy. And Susan, who was Aiden's service coordinator from Early Intervention. I am in so much trouble for not keeping in touch. I'll be sending out a bunch of emails in the next few days. Lots and LOTS of exhibits, including one from Aiden's private therapy group.

Feed the Children was there this year giving all the kids books. A serious score. Miss Alyx, - Aiden's girlfriend - wasn't there due to being sick today, so we picked up an extra set for her.

McDonalds provided lunch for everyone and a certain little boy ate 3 boxes of nuggets and a cheeseburger. I'm not sure where he stores all the food he consumes.

Instead of walking, Aiden rode his bike this year. He has really taken off on riding it by himself the past few months. His PT supervisor said next year, she was setting up hurdles for Aiden to jump over. LOL! I seriously hope she was joking.

We didn't hang around long after the actual walk. The temperatures were getting to Aiden and Chris both. We ended up leaving without me taking a lot of pictures. There was so much to do and see and people to talk to. It is amazing seeing all the kids we met years ago growing up.

Get It Down: 31 for 21 (Day 13)

2011-10-13T13:55:00.002-05:00

TEN COMMANDMENTS for PARENTS of CHILDREN with SPECIAL NEEDS.
Author Unknown

Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.

Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.

Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

Keep in mind the feelings and needs of your spouse and your other children. 6Remind them that this child does not get more of your love just because he gets more of your time.

Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.

Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.

Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Get It Down:31 for 21 (Day 12)

2011-10-12T19:19:00.000-05:00

I am honestly so bad at this posting every day. LOL!

The day started off taking Aiden to school and setting up an "All About Aiden Class" for his typical kindergarten peers. After 2.5 months, they are sure to have questions. So we will be doing that Oct 28th.

I came home, cleaned the kitchen and watched The Doctors television show about crossing the line when it comes to cosmetic surgery. The first segment was Bonnie and Whitney from the television show Big Rich Dallas. Whitney, a 23 year old medical student, wants her mom (Bonnie) to fork over the money for a breast enhancement procedure. Now if you watch the show, Bonnie tells Whitney that if she passes her pre-med classes with all straight A's, Whitney will get a new set of "twins" worthy of belonging to an adult entertainment star. The second segment was on Asian-Americans getting what is known as the "Asian Eye Correction" surgery. Um, okay. Finally the segment every parent of a child with Down syndrome tuned in to watch.... Should people with Down syndrome get reconstructive surgery to appear more "normal"?

For the most part, the panel was against changing the appearance of a person with Down syndrome just to fit into society. The only person on the panel who was in agreement was the plastic surgeon who actually does these procedures of extending the chin, rebuilding the nasal bridge and correcting the eye folds. He said the child's mild/severe features determines whether or not the child needs surgery.

I for one, do NOT agree with changing my child's appearance. I think my child is beautiful regardless. Even though his facial features are not as prominent as other children with Down syndrome, I still wouldn't force any child to undergo an elective surgery.

Dr Sears, whose brother Steven has Down syndrome did make a comment that, though I understand what he was saying, I didn't agree with the delivery. His statement was, "We have been offered to get Steven the surgery. However, we didn't go through with it. If he had the surgery to appear normal on the outside, he isn't normal on the inside." CRINGE!!! Yes, a child with Down syndrome does have the additional chromosomal material in every cell in their body, anatomy is different, but that doesn't make them any less normal than a typical developing person. Pretty sure Aiden has all the same parts inside as say you or me. Granted the only organs I've seen are the stomach, diaphragm and heart, but pretty sure that he doesn't have anything missing or additional inside there.

Dr Travis said it the best though....

Children with Down syndrome should be celebrated for their uniqueness!

Aiden's class went on a field trip to the Carmichael Pumpkin Patch in Bixby. First we went to Pizza Hut for lunch. Three classes of special needs kids were there, 2 from Aiden's school (the class he is in and the 3 year old/Pre K class) and the special needs class from another elementary school. We weren't sure the field trip was going to take place since the weathermen were predicting severe storms. However the weather held out and the kids got to enjoy some fall festivities.

Enjoying lunch

Mom actually let me ride the bus!

Hanging out with the boys

Okay, just one more pose...

Hayride

Group picture

After the pumpkin patch, Aiden had an appointment with Dr. Ears. In the end of May, Aiden's tubes came out with his RSV and pneumonia episode. Dr. Ears didn't want to do another surgery at that time, since he didn't have any fluid and we set up a follow up for today. Hmph.. fluid in the ears. Surgery is scheduled for November 3rd. Dr ENTs nurse wanted to do it Oct 27th, but that is Chris's birthday and spending the day at the Panda Palace isn't the best way to spend a holiday/event. BTDT! Have no intentions on actually scheduling another surgery on or near a day to be celebrated.

While scheduling the surgery, Aiden deemed the time appropriate to remove his shoes. I inserted the child's foot back into said shoes 5 times in under 4 minutes. Pretty sure once we made it to the truck, his shoes, orthotics and socks were removed before we made it out of the parking lot. I'm not sure what his obsession with the little padding on the orthotics is, but the child MUST remove them from the straps on a daily basis. He has lost 2 of them already. Fortunately, we have back ups on older SureSteps. However, they wont be around long if he keeps removing them and playing with them.

Get It Down, 31 for 21 (Day 8)

2011-10-08T15:17:00.001-05:00

Crap, skipped another couple days.

Aiden is feeling much better the last few days. He is eating and drinking his normal amounts, however french fries have become one of his non-preferred foods. We are looking forward to him returning to school on Monday.

My high school reunion is this weekend and he has been spending his evenings at my mom's house playing with my niece and nephew. Sunday is the family picnic and Aiden will be going with us. Most of my classmates have yet to meet Aiden.

Our Buddy Walk is next weekend. We look forward to meeting a few new families we "met" on Facebook.

Aiden had his yearly PT evaluation on Thursday. All new goals have to be made since he has met all the goals from the past year. He even showed Miss Amanda and Miss Jackie that he can ride his bike uphill, so that means his leg and arm strength are getting better.

Get It Down: 31 for 21 (Day 5)

2011-10-05T18:33:00.000-05:00

Oops, skipped a few days. Sunday, Monday and Tuesday we were not the happiest and healthiest bunch of bananas. Aiden has been producing a ton of snot and well, that is apparently contagious. All three of us have sinus problems.

Aiden was well enough to go to school this morning, but during my Zumba routine, he decided to throw up at school. I went to pick him up and he was feeling good enough to start dancing in the middle of his classroom and commenced singing. So, we decided to keep him there. While there, his special education teacher informs that his general kindergarten class is taking a field trip to the same pumpkin patch they are taking him to a week earlier and I already filled out the permission slip for special education. Can we skip that one?

I had to go to ~~um, slumming - would be too nice of a word for the neighbourhood~~ - pick up an equipment order that Aiden's PT ordered over a year and a half ago. The things we do for our kids.... honestly. The neighbourhood is located in what is known as a "grey zone" meaning that it is IMPOSSIBLE to get pizza delivery due to crimes in the area. The type of area you want to take you friends Mr Smith and Mr Wesson and their 15 friends. I swear someone in the SSI/DCP office has sniffed too much White-Out.

On the way back into town, I decided to stop at the nail salon as my ~~20th?!~~ high school reunion is this weekend and I **had** plans to get little red zebra print painted on the nails. Had being the operative word since Aiden's school receptionist called immediately after the overlay had been sanded off. Aiden apparently puked on the lunch table. Fine... I go get the child, called Dr. Pediatrician, scheduled a "sick child appointment" for later in the afternoon and went to get my nails finished. While the over lay was being applied, the child decided he also needed a case of diarrhea. I still don't have zebra print on my nails.

Bring the child home, change the butt covering and voila! the child is cured. WTH?! He feels great enough to eat, drink and run around the house. However, he is still going to the doctor. Get to the doctor's office, weight and measure and all that fun stuff. Nurse Practitioner Student comes in and Aiden automatically raises his shirt for her to listen to his heart/chest. Yeah, he's that experienced. He will however not allow her access to his mouth.

Dr Pediatrician comes in and we repeat the process. It takes 3 people to confine the child's limbs to allow Dr Pediatrician to view inside the child's mouth. It's red. Of freaking course. Strep swab comes back positive. Prescription for antibiotics faxed over to our pharmacy. Okay, great, gotta go there anyhow to pick up blood pressure medication for Aiden.

Get to pharmacy and fax is arriving same time we are. Blood pressure medication has not been compounded yet, do we feel like waiting? Sure, really don't like making that many trips into the pharmacy in one day anyhow. While waiting, Aiden decides to empty the sucker container of every-stinking-one of the suckers located in the container. I think they had an entire case of DumDums in there. Aiden then walks around looking at all the Halloween decorations. He was fascinated with the papier-mache pumpkin that was so nicely sitting on a stand.

Come home and time for meds. Why can't all of Aiden's medications taste like Amoxycillin? My life would be so much easier if he inhaled the crap straight out of the syringe before the plunger hit the bottom.

Get It Down: 31 for 21 (Day 2)

2011-10-02T17:59:00.001-05:00

"The doctor who discovered Down Syndrome many years ago was Dr. John Langdon Down.
I really wish that his name was Dr. Up so that today, Down Syndrome could be called
"UP" Syndrome instead. Then maybe people would begin with a better attitude towards
us as they start to understand what we are all about and what we are really capable of doing." - The Annie Forts "UP" Syndrome Fund, Inc.

Get It Down: 31 for 21 (Day 1)

2011-10-01T18:26:00.001-05:00

Here it is again, the 5th Annual Get It Down: 31 for 21 for Down syndrome awareness hosted by Trisha at Unringing the Bell. Incentive to update the blog on a more routine basis.

Has it really been 5 years? I guess it's only been 4 for me personally. LOL!

October 1. The first day of National Down syndrome Awareness Month. The month where families all across the world wide web are posting facts about Down syndrome and little tidbits about their children. I've seen it on facebook.

Today, Aiden and I did our Buddy Walk fundraiser. It wasn't much of a turnout, but oh well. It was our first and there are a lot of things going on in our area. We did have a lot of fun though and met some really nice people who came out to support Aiden, DSAT and the Buddy Walk.

I didn't want to do a slide show. Women ~~sweating~~ glistening is not a pretty sight. The event center did take a group shot before the workout began, so once I get a copy, I'll share that. :D

Answers to Questions

2011-09-23T16:31:00.001-05:00

Does Aiden not like school? How long is he at school. I am so worried about kindergarten next year. Aiden DOES indeed like school, he just doesn't like the drop off part. He enjoys his classes (both special education and general) and really enjoys PE, Music and Art. This year he is in all day kindergarten from 8:30am until 3pm.

About school - do the teachers report that he settles down after you leave? Absolutely, when I pick him up, they always report that after about 30 minutes (I drop him off at 8am for breakfast with his classmates and I head to Zumba), he stops his whining/crying. The last few days, he has gone into class and right up to his teacher for hugs and kisses. We have learned that his teacher MUST be the one to help with breakfast - last year it was one of the aides. And that another aide - Miss Robin (or Nana) is the one that has to help with lunch. Otherwise the child will not cooperate at all and refuse to eat.

Good Days, Bad Days

2011-09-22T20:11:00.000-05:00

I haven't been blogging much, I just really haven't felt like it. There is a lot going on in Aiden's world.

I take Aiden to school every morning. We live within walking distance of the school, but Aiden isn't going to walk that far without sitting down and wanting to play in the leaves. So we drive. And as soon as we're in the vehicle, he demands the DVD player comes on. Seriously? He gets to watch about 4 minutes of the Cars movie - from our driveway to the school's parking lot.

As soon as we get into the classroom, he helps me put his backpack in his locker and the whining begins. Well, most days it's whining, there are days where it is full blown crying. I tell him he isn't going back home until school is over. I do wonder if putting him on the bus would help, but I'm not sure I am ready for that step. I did talk to the bus driver about it. I just haven't called the transportation department to do anything about it.

Lunch at school is a hit and miss. Somethings he'll eat, other things he wont.

Over the weekend, we went to the annual Scottish Festival. Normally Aiden would be waving at everyone and wanting to eat everything in sight. He didn't want to eat ANYTHING though. Then Sunday night he was sick and spent the day Monday at home.

Our Buddy Walk fundraiser is moving right along. A little over a week left. Friday I have to pick up the stage from Aiden's school and deliver it to the event center. Saturday morning I have to stop by one of the local stores who is donating a gift card to give away as a door prize. I still have to fill out the thank you cards for those who are donating time/business/buildings for the event. Oh and make a photo slideshow to play at the event.

Aiden was bitten by something yesterday. Not sure what though. He has a bite mark that started out looking like a mosquito bite, but turned into this.........

Fundraising

2011-09-12T18:33:00.001-05:00

All summer long, I've seen posts on Facebook for fundraising for this that or the other. International adoptions, car washes for sending kids to camp, MiniLaps for the Little Light House, and now the Buddy Walk. Generally, I just put the little thermometer thingy up and call it good enough. However, this year, things are different. With the economy the way it is, people just don't want to donate money to a charity. I understand that. Even things are a little tighter around here.

The other day, there was an event invite for a benefit for a little boy in a town not that far from here. Not just any fundraising event, but a Zumba event. This gets the wheels to spinning in my head. This is something I can get behind! I LOVE Zumba! So, I went to my class the next morning and asked my instructor about the possibility of doing one for Aiden's Buddy Walk fundraiser. She was so on board with the idea.

I came home and started making some phone calls. First, we're going to need a location big enough. The place where I go to class isn't that big and well, who wants to drive to BFE? I called a friend of mine who is a DJ and he suggested a location in Tulsa that would be big enough. I called the Stokely Event Center, spoke to the owner, went up there and looked around. The place would be great for a large group of women and got a heavily discounted price for a charity event. Then my cousin got bottled water donated. My Zumba instructor contacted a few other instructors and they are volunteering their expertise.

So we've gotten the ball rolling! I printed out flyers for the instructors and a few businesses in town are happily handing some out also. I sent out a huge event invite on Facebook and friends are sending it on to their friends. We even have flyers being handed out at our local fall festival this week. We'll even be giving away a few door prizes!

Hopefully we get a great turn out and this can be our annual fundraising event for the Buddy Walk.

Check Up, AAI and Panels

2011-09-01T21:09:00.000-05:00

Aiden had his 5 year check up today with Dr. Pediatrician. He did pretty well up until she wanted to look in his ears and mouth. He bit the tongue depressor in half trying to keep it away from that area. We went over what labs needed to be done and she ordered his c-spine xrays to check for atlantoaxial instability. Normally that would have been scheduled around Aiden's third birthday, but former Dr. Pediatrician and I had concerns as to how well the xrays would have been with Aiden being as small as he was. Now that Aiden is the size of a typical 3 year old, we did the xrays.

We also discussed the seasonal allergy battle. Benadryl has been Aiden's best friend this past week. But I can't keep dosing the child up with Benadryl 3 times a day for the rest of the fall/winter/spring. So, she called in a prescription for Flonase with a chaser of Claritan to our pharmacy.

After the appointment, I called Aiden's teacher and let her know that Aiden would not be in school the rest of the day due to the labs and radiology. I really didn't want to take him out of school 2 days, so we just did them all today. Once we found the imaging center (not the one we normally use for cardiology, though I do think that one would have been faster at check in....), we went to the radiology waiting room. Once Aiden's name was called, we went back to the xray room. Aiden did pretty well getting his xrays, he let them put him in whatever position they wanted. The first xray wasn't that clear, so another 2 were taken of the front view, then one of the side. We were then released to go to the "vampire". However, half way down the hall, the xray tech comes out and has us follow her back in. Just my luck, she wasn't experienced with doing AAIs. So, her supervisor and the actual radiologist comes down to get the xrays with the mouth open for a full view of his c-spine. By this time I was starving, so Chris went in with Aiden and got him to say "Ahhh" long enough for the xray.

Then we headed down to the lab for his blood draw. Dr. Pediatrician ordered a complete panel for thyroid, CBC, celiac and lead. Aiden did really well with the tourniquet. That is about as far as it went. The vampire had to call in back up to hold his legs and arm while I was holding the body still for the actual stick. And Aiden let EVERYONE know that he was not a happy camper with the blood curdling scream he emitted. The sad part is that the vampire had not even bit the child yet. He knew it was coming though. The poor old people in the waiting room probably thought we were killing the child.

Birthdays

2011-08-27T20:13:00.001-05:00

The Big K

2011-08-21T16:14:00.000-05:00

Aiden started kindergarten on August 11th. We went to the "Meet Your Teacher" Day the day before school started. He had not been in the building since May, but he remembered where his classes were. He walked into his special education class and gave Miss June and Miss Robin hugs, but he didn't want to hug Miss Jennifer, he was too busy finding and playing with the toys by then.

After that, we went down the hall to meet with his general education teacher, Mrs. S. She was a second grade teacher last year, but with the expansion of all day kindergarten, she switched to teaching that grade. And she actually asked that Aiden be placed in her class for his inclusion classes. The halls were packed with teachers, parents and children. Aiden of course thought he was the "king of school" and was telling people to get out of his way. I kept telling him to slow down and be nice, but he wasn't having any part of that. He knew where he was going and nothing was going to keep him from getting there. Fortunately, his kindergarten class is in the exact same room that his pre-k class was in. However, he didn't want to go in the class, because the layout was different.

On the first day of school, he didn't want to leave the house and sure didn't want to walk into the building. As soon as we entered the building ( I carry Aiden across the parking lot for safety reasons ), I put him down for him to walk and he immediately sat down and scooted in front of me waiting to be picked back up. He did manage to walk into class all by himself. And the same happened on the second day.

Chris of course was freaking out all day because Aiden has never been away from us in school that long. "What if something happens to him?" Then Miss Jennifer calls. "But what if she doesn't?" She will, without hesitation. And she knows we are only 2 minutes away. I really didn't know what to do after 11:00 that morning, so I caught up on my reality shows. LOL!!

Chris rescheduled his physical therapy appointment to go with me to pick Aiden up from school.

On Monday, the child could not leave the house fast enough. As soon as he saw me grab my purse and his back pack, he was headed out the door. Good, he is liking school.

With all day kindergarten comes lunch at school. We are learning what Aiden will eat and what he wont eat. Of course everyone thinks it odd that Aiden will actually eat broccoli and likes it. Aiden's allergies sent him home on Tuesday after puking up a ton of mucus with his stuffed crust pizza.

Wednesday was the IEP Day. We stopped at the donut shop before school and I took donuts in for the team. Everything went as planned except for his OT goals. This has become my headache. Out of the 9 goals the contracted therapist set for Aiden, I agree with 2 of them. And so does Aiden's teacher. She kept waiting for me to say "For real?!", which I did and left a few comments regarding the intelligence of the therapist on the bottom of the page for his goals. And the director of special education ended up getting involved.

On Thursday, I went to drop Aiden off and let Miss Jennifer know that I would be willing to give the therapist a week to come up with a new evaluation and goals that were appropriate for my child. On Friday the therapist called while Chris and I were doing our grocery shopping. I will be speaking to her supervisor as she is apparently not able to get anything through my thick skull. I swear I was as nice as I could be under the circumstances.... I didn't cuss or tell her exactly what I thought of her. She tried to place blame on Aiden's teacher and I shut her mouth real quick on that one. I ended up calling Aiden's private OT and there will be a meeting at the school this Thursday. I gave Aiden's teacher the head's up and she is getting the necessary people to attend.

Aiden is enjoying being in the general education class as well. He goes 90 minutes a day with music, art, library and P.E. The first day of general education, he was too busy meeting and greeting his classmates to do any work. However, the child is thrilled to death with P.E., so we will be really working on maneuvering the steps in the gym, running, kicking and jumping. Not sure how the child enjoys P.E. - I never did.

A Back to School Prayer For Moms

2011-08-11T07:00:00.000-05:00

The Back to School Prayer -- powered by flowgo.com

Noodles

2011-08-10T20:35:00.001-05:00

The Change-Up

2011-08-09T09:56:00.001-05:00

Several weeks ago, we saw a trailer for the movie, The Change-Up starring Ryan Reynolds and Jason Bateman. My first thoughts on the film was "Oh yay! Another twist on Freaky Friday. Honestly, how many times does that movie need to be done?" We left it at that and decided it wasn't worth our time seeing the movie. After all, I've seen Freaky Friday and it's numerous remakes dozens of times.

Then the posts started happening on Facebook. Hollywood did it again. The R-Word was placed in a scene. But not just in any context apparently. The scene that is getting all the attention is at the beginning of the movie when Ryan Reynolds who plays a bachelor who has never settled down, visits his long-time friend Jason Bateman; he sees his twins in their high chairs and says, “Why aren’t they talking – what are they retarded?” .... but then he says, 'And this one, he looks Downsy.'”

One would have thought that with the backlash of Tropical Thunder (which btw, still has NOT been viewed by anyone living in this house), that someone in Hollywood may have had a change of brain and decided "Hey, it is not okay to use this word. Nope, not the case. And then added insult to injury by the "Downsy" term. Really?

If you find that type of behaviour acceptable or funny or make excuses for someone who does discriminate or condone the behaviour or action, then you are just as guilty as the person who said it. It isn't guilt by association, it's guilt by accessory. If you know something is wrong and choose to say nothing, then you are just as guilty.

Now, I'm not saying you can't go out and see the movie, I ,for one, will not be standing in line to get offended. If you do choose to see the movie, that is your choice. However it is my belief that in doing so, you are condoning discrimination of people with developmental disabilities and those with Down syndrome.

5 Days and Counting

2011-08-05T16:27:00.001-05:00

With the back-to-school shopping done, all that is left is getting Aiden back on his "school schedule". All summer long he has been staying up late and getting up even later. So, I have been trying to get him up at his school time of 6:30am.

However, on Monday, Wednesday and Friday mornings I have Zumba class. And I do wake him up before I leave the house. Chris won't keep the child awake though. So, when I get home from Zumba, I have to rewake the child. We will began again in the morning. I'll be skipping Zumba next week to guarantee the child is up at his regularly scheduled time.

Monday, we have a relatively quiet day. Tuesday will be the last day of private speech therapy until ???? due to the fact that Aiden will be in all-day kindergarten with inclusion (more on that in a few) and I won't allow Aiden to miss instruction time for private therapies. Aiden also has his bi-annual check up with Dr. Pediatric Cardiologist. On Wednesday, we have Meet Your Teacher(s) Day. And school begins on Thursday.

Last year, kindergarten was only half day and the kindergartner teachers were not exactly "thrilled" with having a child with special needs in their class rooms. Earlier this summer, our school district announced all day kindy and that several new teachers for each school would be hired. I called Aiden's teacher and we discussed the possibility of adding inclusion to Aiden's IEP. She assured me that she would speak to the new teachers and find out how open they were to having Aiden in their class rooms.

My thoughts on the whole inclusion thing is yes, it may be FEDERAL LAW that a teacher can not deny my child the right to be included in their classroom. However, I firmly believe that if the teacher does not want my child in the classroom, then fine. I don't really want my child in your classroom either. My child isn't going to learn from you. Aiden goes to school to learn. Plain and simple.

When we went up earlier this week to drop Aiden's classroom supplies off (THANK YOU MRS. RAY!!!), there was a discussion about inclusion placement. I was assured that Aiden would be placed in a typical class for inclusion.

Then yesterday, I got a Facebook message that Aiden did indeed have a placement in a typical class for kindergarten. YAY!!! Due to Meet Your Teacher Day, I couldn't find out who Aiden's teacher would be. So we will be attending MYT Day. But I was told that I would be pleased. So, double YAY!!!

As far as our private therapies go, we (his OT and PT) have agreed to re-arrange their case loads to work with Aiden after school. But his ST was not able to come after school because of her child. So, now we are put on a waiting list from the huge demand for after school services until our private therapy group hires more therapists.

The Joys of Back to School Shopping.....

2011-07-31T20:11:00.002-05:00

In order to make sure I have the next 9 days to enjoy the child's remaining days of summer vacation, we went Back to School Shopping for clothing this morning. Our first stop was TJ Maxx. I love buying Aiden's clothes here. Instead of paying $50 - $60 for a RL Polo shirt, I pay $12. Granted, I do have to dig through a ton of clothing that I don't like, we still find some really great deals. 2 pairs of Levi's, 2 shirts, 3 outfits and a fleece hoodie for under $100. However, TJ Maxx does not carry toddler/child size shoes.

I usually have really good luck at Ross getting Aiden's shoes, so we head over there. There the child decided on 2 pair of new sneakers. Total damage at Ross = $36 for 2 pair of name brand shoes that fit over the new orthotics.

Aiden did really well while shopping and no "tired of shopping fits" were thrown, so we went to lunch. We went to a Mexican fast food chain and Aiden devoured 2 bowls of Spanish rice.

On our way to the restaurant, our friend Mandy (and her boyfriend Chris and daughter Katy) from OKC called and were headed to Jenks to visit the Oklahoma Aquarium. She asked if we wanted to go. Since my Chris hasn't seen her Chris in a few years, my Chris was all excited to go. After lunch, we came home and changed Aiden's clothes and grabbed the camera.

I took over 300 pictures at the aquarium, it was our first time there. Aiden didn't seem that impressed with looking at all the varieties of fish.

Some time this week, we have to tackle the trip to the hair salon.

Coming to An End

2011-07-29T18:41:00.002-05:00

Summer that is. School starts August 11th here, so that is just under 2 weeks. The child is ready to go back to school, but it is going to be a transition going from 2.5 hours a day to full day kindergarten.

The school supplies are bought. Next week we will start on the clothing and shoe adventures. Aiden got his new orthotics yesterday, so new shoes are required. I also cleaned out his closet, so he is minus half of what he did own. I sent three 33 gallon trash bags full of clothes to a friend in OKC whose youngest son is wearing what Aiden did last year. I won't get into details about how much younger this child is, but Aiden is almost 5 and just now wearing a 3T in shirts.

Aiden is more and more verbal these days. He is even comfortable enough with his therapists to entertain the idea he is old enough to start cussing them out. We will be replacing our ST once school starts though. Due to inclusion, Aiden will only get outside therapies after school. His ST doesn't work after school hours.

His IEP will be done within the first 2 weeks of school due to achievements over the summer. New goals to be made and so forth.

I am ready for the all day school hours and Aiden will have no say in whether or not he'll be attending all day. My stress level has reached it's breaking point.

Hearing, More or Less

2011-07-19T14:47:00.001-05:00

We have been trying for a few months now to get Aiden into a sedated ABR (or BAER). We were planning to go to OKC to have this done. However when I got the important information from the hearing clinic down there, they had him scheduled for another booth test. Ummm, nope. There is no way I am about to drive that far for the same exact results that I can get locally. So I called Aiden's audiologist Meredith and we went with Plan B. She would call Nancy to see if she was willing to test Aiden as a courtesy. Nancy did Aiden's first ABR following his initial heart surgery.

Nancy called a few hours later and we set the appointment for Friday. After sleep depriving the child for 30+ hours and refusing all requests for food and drink, we made our way to Tulsa. The child has an uncanny ability to fall asleep in his ~~recliner~~ car seat, so every 45 seconds I'm reaching into the back seat to tickle the child and receive several retorts of cussing for my attempt.

Once we make it to the office, Aiden is once again wide awake. The sleepy medication is given and I try to get Aiden to lay down to take a "nap." However the child will not cooperate with this plan. So, we load Aiden back into his recliner and take a drive around the block. The child falls asleep and we head back to the office. I lay Aiden down on the little bed, the electrodes are hooked up. His little shoes are taken off. And he sleeps through all this.

As soon as the pulse ox sensor was placed on his toe, the child wakes up. Seriously.

So another dose of sleepy meds, anther drive around the block, a trip to McDonalds and the gas station, the child is finally asleep.

Yes, it took an hour, 11 miles, 2 doses of drugs and 2 stops before the child would go to sleep.

We get back to the office and hook Aiden back up to the wires and computers. The child decided a nap- though drug induced was not a bad thing. And he slept 1 out of 2 hours needed for the ABR. He probably would have slept longer, but he wanted to roll over and sleep on his stomach. However being attached with the wires, he couldn't and therefore woke up.

We get the initial results told to us and I called Meredith and gave her the news....

Good news... the results initially show "normal" hearing range.

Bad news.... very mild hearing loss in both ears. However the child had enough ear wax to influence the testing. Fortunately, she removed a lot of it. Ear wax removal is worse than teeth brushing or fingernail grooming.

Good news..... discontinue the hearing aid use.

Bad news.... continue with OAE's when the child and sit still and cooperate.

Of course Meredith was happy and we will be returning his "ears" back to the office for donation for another little boy's use.

Fearfully and Wonderfully Made

2011-07-10T20:56:00.000-05:00

I am an avid reader. As Debbie at Finding Normal says, I am a "free nook book hoarder." Yes, I probably am. I'm addicted. To the point my sister asked me last night, "When you get your new nook, can I have the old nook?" (My current nook is not even a year old!)

Not that long ago, I downloaded a science/medical/futuristic thriller. The Book of Adam: Autobiography of the First Human Clone. It is an interesting read, and touches a lot on the ethics of cloning and artificial life, limbs and so on. To the point of are we, as humans, playing God? It touches on genetically enhancing humans and I expected, to a point, to touch on the subject of chromosomes. What I did not expect was....

"Does that mean doctors shouldn't be genetically correcting sickle-cell anemia or Down syndrome? Are the children spared from such maladies less human because we tinkered with them or should we leave them as naturally screwed up as God made them?"

Ouch. Yes, there it is. In black and white e-ink.

The page continues on with "But my existence (as a clone) is still dependent on God because God gave the physicians the skills they used to make my life possible."

"That argument would mean anything mankind can create is okay with God."

We already know that the majority of pregnancies with a prenatal diagnosis of Down syndrome is terminated upon receiving that diagnosis. Some parents of children with other chromosomal anomalies are told to take the child home to die. Others are told to place the child in an institution.

And here it is in black and white that my child is "naturally screwed up."

I don't view Aiden as being "naturally screwed up." Never have. Though I do admit to knowing a few "typically developing" people who are more screwed up than a light bulb. I know, I shouldn't have said that, but I did. So there.

The point is that God MADE my child the way he is. For a reason. I don't question why. It's not my place. Do I fear that one day medical science will have eradicated Down syndrome? Of course. With a 90% termination rate, it is possible.

And the question is will we as humans allow it? Are we so scared of being "different" that anything that is not exactly what we define as perfect not allowed to exist?

June

2011-06-30T17:10:00.001-05:00

I know, I let the whole month of June slip by without a whole lot of posts. So here is a run down of the month....

Thursday, the 10th started out with speech therapy. Then loading the Mountaineer. And I do mean loaded. A suitcase for Chris and I, Aiden's suitcase, a snack/DVD bag - those dual portable DVD players came in handy - 2 body pillows, 2 40 gallon ice chests, my hair/make up bags. We went to Branson for vacation/fundraiser. Chris won the "how to get there" discussion and we went the scenic route via Arkansas. Yep, not a whole lot of scenery other than the foothills of the Ozark Mountains.

We made our way through southern Missouri into Branson via GPS on my phone. I don't think the Google Map printout would have gotten us there. We found the hotel we were staying at the first night. Right on the Branson strip. Oh, yeah, we passed a Tanger Outlet Mall, so after we unloaded the Mountaineer, we went shopping. I bought a new watch. (It just isn't right to turn down a Fossil charm watch that was priced at $30!) Chris bought a few new shirts. Took Aiden swimming in the hotel's pool. Aiden thought the hot tub was much more entertaining since that is where all the teenaged girls were hanging out.

Friday morning, we went to the hotel where the Mustang Rally was being held and finally got checked in there. Down from that hotel was an ice cream stand. We waited over 40 minutes for chili cheese dogs. Apparently, the guy running the stand could only make one at a time. Throughout the day, the Mustangs were showing up. There were 85 Ford Mustangs at the Branson Mustang Rally from several states. All there benefiting the Little Light House. From the classic 64 1/2 to a few 2011. I absolutely fell in love with a red '64 1/2 Pony.

Aiden was much more interested in the race car that was there.After all, the child has inspirations of being a NASCAR driver.

Saturday morning, Chris's mom and I went back to Tanger, where I purchased, yes, another watch. My watch collection is slowly catching up with my shoe collection. We then returned to the hotel for the auction part of the Rally. I told Aiden's story and how the LLH helped Aiden reach his goals.

Then we all went shopping at the Branson Landing Mall. This is just like any other mall in America, only it's all outside. This concept might be good in the spring or fall, but summer.......... After shopping there, we returned to the Tanger Mall again. HAHAHA! No, I did not buy another watch. Chris's mom left with a pair of Nike shoes though. We then went to an early supper at Whippersnappers. Home of the all you can eat seafood buffet. They have whole lobster on the buffet. Aiden was not that impressed once he realized lobster is not ready to eat. He did enjoy the crab legs and macaroni salad though.

Saturday night, Chris and I went driving around Branson and to the Titanic Museum. Cameras are not allowed inside the museum, but I snapped a few on the outside.

When you go into the museum, you are given a "boarding pass" of a person who was on the Titanic. At the end of the semi-self directed tour, you find out whether you lived or perished in the sinking. Half way through, I found out my person survived as there is a display of her at the museum. She was Lady Lucy Duff-Gordon, a fashion designer in New York. Chris's passenger also survived.

I also had to have a picture of King Kong hanging off the New York skyscraper....

Sunday, we drove back through Missouri and stopped at a few stores along the way. I managed to snag a 60th anniversary Snoopy mug for my collection. We also stopped in Joplin to see the devastation caused by the tornado. I know the main thoroughfare where the tornado centered. A lot was damaged. The clean up crews are still there, it will take a while for all the debris to be just a memory.

The following weekend, June 18, Trace Adkins did a concert at the Hard Rock Hotel. Chris got us tickets for my birthday. We were in the front row about 3 feet from the stage. My pictures didn't turn out that great since I had to use my cell phone. But I did manage to take 134 pictures of Trace.

Sunday was Father's Day and spent the day just hanging out at the house. Then Monday was my birthday. We took my best friend and Aiden's godfather, Jason, to lunch. We share the same birthday, so it's a 2-for-1 Day.

Wednesday, June 22, Aiden had an appointment with Dr. Pediatric Heart Electrician in OKC. Aiden's anti-tachycardia medication was upped from 2 doses a day. He now gets 3 doses a day. We discussed Aiden needing a sedated ABR, but no one in Tulsa will touch him because of the heart issues. The audiology team in OKC was our last option IF OKC cardiology will permit it. Dr. Pediatric Heart Electrician is willing to sit there during the ABR if need be. I called Aiden's audiologist here on the way home and told her to get started with the audiologist in OKC. We just got acceptance from them earlier this week. So within the month, we'll be making another trip to OKC for his hearing test. Aiden's audiologist thinks that once we do the ABR, his hearing loss will be improved from severe/profound to mild based on how he responds functionally. She also said to leave his current hearing aids off for the time being since he refuses to wear them for more than 30 minutes. We don't want to risk him not wanting to wear them period if we have to make adjustments after the ABR.

Also when Aiden goes in for his dental surgery in OKC, Dr. Pediatric Heart Electrician wants to do a trans-thoracic echo. Yay!!!!

Aiden is also sans orthotics for the time being. He is outgrowing his and refuses to wear them also. His PT and I discussed the options. I made an appointment with his orthotist for Tuesday, so Aiden gets to go without his current orthotics until the new ones are made.

So You Think You Can Dance, Pt 2

2011-06-29T14:50:00.001-05:00

While I'm cleaning, I always turn my iTouch on and hook it up to the receiver. Why not get entertained while shampooing the carpets?

Being summer vacation, Aiden is home while I am doing my cleaning chores. And he loves music. He decided to join me in the living room for a brief performance of Pitbull's Fuego. If you have been watching So You Think You Can Dance, you may remember a similar performance a few season's ago. Here is the original performance by Pasha and Lauren...

And Aiden's version....

Make an on-line slide show at www.OneTrueMedia.com

Mr Clean

2011-06-22T06:00:00.001-05:00

Home From Vacation

2011-06-12T21:21:00.002-05:00

I'll post more about it later. I am beat. LOL!!!

More Hearing Woes

2011-06-02T17:18:00.000-05:00

This morning, a certain little boy whom every one thinks is "just so darn cute" decided to wake up at 3:30 this morning. He came to the big bed in hopes of getting him back to sleep. Ummm, nope didn't happen, so at 4:30 this morning, he went back to his room to play. Sometime between 5am and 7am, he fell back asleep on the floor until shortly after 7 when I had to wake him up for a trip to the audiologist. The trip to the audiologist was pretty uneventful except for the fact that the inexperienced teen and out-of-state drivers, who for some unknown reason, think the BA/169 exchange is too scary and stop in the middle of the road. The driver I happened to be behind stopped 3 times.

We get to audiology and Aiden promptly heads back to all the rooms where he knows someone is in. He makes it back to his audiologist's office and welcomes himself in to play with the toys. Aiden found the toy stethoscope and expertly sits down in the middle of the floor, puts the ear pieces in his ears and listens to his heart. This prompts the audiologist to get her iPhone out and start taking pictures. Then he checks her heart and hands her the stethoscope so she can listen to both his and hers.

I hand her the hearing aids since one ear is constantly ~~buzzing the tower~~ providing feedback and the other one doesn't seem to fit right. We discuss that the ENTs associated with the audiologist is too freaked out to do a sedated ABR and decides to pass on the audiologist's much desired ABR. Well, that opens up a few options, we go to the audiologists in OKC when we do Aiden's dental surgery in February or possibly Hearts for Hearing, also in OKC. There is also the possibility that we go to the first woman who saw Aiden as an infant and diagnosed the hearing loss that started this whole mess.

During the hearing test, the audiologist said that Aiden possibly has fluid behind his right ear and thought that both tubes were blocked. On the way home, I called to make an appointment with Dr. ENT to check the tubes. It has been a year since his tubes went in. Since we switched pediatricians last month, I had to call Dr. Pediatrician to get a new referral for Dr. ENT. Which meant we had to go in for an office visit. Which well, if Aiden needs new tubes, we could always go the "already sedated route" and do the ABR.

Summer Vacation Begins

2011-06-01T19:21:00.001-05:00

Aiden's last day of school was Friday. His teacher asked if I would pick him up 30 minutes late as they were providing McDonald's for the kids' lunch and she didn't want him to miss out on it. So, I rescheduled his OT for 35 minutes late and he stayed.

Saturday, we just hung out at the house. Sunday, Chris and Aiden went to Fuddrucker's for lunch and spent the day doing "guy things". I stayed home and attempted to take a nap. However my neighbours all decided to mow their lawns right outside the bedroom window.

Monday was Memorial Day and we spent the day out driving around and doing some shopping.

Tuesday, Aiden had speech and really needed a nap but decided that as a kindergartner, naps are no longer needed.

Today, I decided to do some last minute shopping for our weekend trip to ~~Hillbilllyville~~ Branson. Aiden needed a floatation vest for the pool, so he got one of those and some swim diapers. Potty training for tinkle will begin the Monday following our trip. All of his snacks are purchased and we have to get with the hotel to make sure we have a mini fridge for his medications and milk.

When we got home, I washed out the ice chest that will be needed for this trip. While Aiden was content drawing on the deck with his sidewalk chalk, I cleaned out his pool and started filling it. Half way through the filling process, the child realized that the water hose was being utilized and decided that he wanted to help fill his pool. Yes, he was fully dressed. The dog took the opportunity to lay in the cool sand box.

Chris came home as I was cleaning out the pool and asked if the ice chest I cleaned out was the one that we were taking. Um, yep sure is. He proceeded to head out to the shed and get the "bigger" ice chest. For real?! The one I cleaned is 38 gallons. The one he retrieved from the shed is 40 gallons. Now, I'm thinking to myself, 2 gallons will not make that much of a difference. Besides, my ice chest has wheels and a handle.

The man is thinking we will be taking both.....

Huh? How many SUVs are required for a weekend trip? I intend on taking luggage filled with clothing. And my hair bag. **Yes, my hair requires it's own luggage. With hairspray, 2 different kinds of hair goo, dryer, flat iron, shampoo, conditioner, hand mirror. Additional baggage is required.** (The last time I went to Hillbillyville, it was the 80's. When big hair was in style. And I had the biggest hair there. And it stayed in place, even after I got lied to about the log ride where I would NOT get WET!) Aiden requires his own bag with clothing, diapers, swim diapers and shoes. Not to mention the travel cooler for his medications, snacks and drinks.

Not to mention the man wants to take the scenic route so that we can gaze upon the "World's Largest Whatevers" on the way there. Of course my route is the toll roads. Which reminds me, I need to give the OTA some money....

Happy Memorial Day

2011-05-30T20:47:00.000-05:00

We Are The World

2011-05-26T17:04:00.000-05:00

Aiden's school has a yearly talent show that the teachers put on for the kids at the end of the year. I found out about this yesterday when I picked Aiden up from school. His teacher asked if I would bring him back up today for the talent show and have him wearing his kilt.

So, after picking Aiden up from school today, we came home and ate lunch. Grandma Nise took off of work early to go to the talent show and see Aiden's performance. I have forgotten in the past to tell her of the assemblies where Aiden got Tiger Cub recognition and got into trouble for it. We got to the school and I changed Aiden out of his regular clothing and into his kilt and fly plaid. Then we went to the gym.

I did not take a lot of pictures due to "no cameras allowed" policy for the talent show. I was however allowed to video Aiden's class performance.

Photo and video editing at www.OneTrueMedia.com

Miss June, one of the aides in Aiden's class, did the sign language in ASL. Each of the kids were dressed up in costumes from around the world. Aiden in his kilt, a kimono from Korea, a "mud rug" from Africa, an actual BDU from war and a Mexican sombrero.

Jumping Rope 101

2011-05-18T17:13:00.000-05:00


Get a rope, any rope. It doesn't have to actually be a rope. Mom's nook usb cord works just as well.


Turn around to show Mom you have her nook cord.


Make sure you stand in front of mirror to watch yourself.


Put your rope behind your back.

Put the rope in both hands.


Stretch the rope to it's full extent and put the ends in each hand.

Being Under House Arrest

2011-05-17T16:41:00.000-05:00

The child has lived in his jammies since coming home from the hospital. Nor does he think he needs to go into the bathroom for any reason. He did try to sneak out of the house yesterday though. Today, he noticed the door leading out into the garage was opened. I got yelled at for not letting him go for a bike ride.

He is eating more, which is good. However, he is really enjoying the snack foods that was in the "care package" from his teachers - especially the Rice Krispies Treats. Within 15 minutes of waking up, he wanted breakfast and ate the entire plate of scrambled egg, cottage cheese and 2 slices of toast. I just made him a grilled cheese sandwich, but Chris is eating chips and dip, so the grilled cheese goes untouched.

Our private insurance Care Nurse - yeah, I didn't know we had one - called to check on Aiden. I was quite surprised. Not all insurance companies will call and ask how the patient is doing. She gave me a few numbers to call in case anything happens. Umm, pretty sure I'll be skipping that step if something came up in the next few days.

Aiden's audiologist called today also. Aiden's ear molds are in and she was unable to rip the tubes out of the new molds. Being under house arrest though, we can't leave to pick them up. She is mailing them to me and I will cut the tube to the needed length.

I am in the process of losing my voice. This is not good. Chris returns to work tomorrow. Hmmmm, should prove interesting.

Home Away From Home

2011-05-16T14:23:00.001-05:00

After spending last week being sick, trips to 2 different doctors, Aiden bombed on Friday and went to the emergency room. We got to the Pediatric ER at St. Francis Hospital. The intake nurse asked what his O2 levels usually run. Obviously, he wasn't looking his healthy 97 - 99. As soon as she hooked up the pulse ox, his number was 79.

Having a pulse ox number of 79 automatically gets an oxygen mask attached to your face and a room full of doctors. It also gets you admitted.

Yes, we spent the weekend at the Panda Palace. Diagnosis - strep, sinus infection, pneumonia and RSV.

RSV, the virus I had home health out to the house 5 months out of the year for. Giving Aiden injections until he was 2 years old. We have avoided it until now.

The combination of those four things landed Aiden in "jail". Confined to his room and tethered to an IV pole, oxygen cannula and oximeter. He wasn't happy with me Friday or Saturday. He spent most of Saturday sleeping. He managed to speak a few times when Dr. Pediatric Cardiologist came to check on him. He told her "bye bye" and informed his night nurse and respiratory therapist what he thought of them.

On Sunday, his teachers and aides brought him up a "care package" and balloons. The balloons made his day and his health turned for the better. He got to come off his oxygen and he started eating. By the end of the day Sunday, he had eaten breakfast, lunch and dinner and had taken enough fluids by mouth that he could come off the IV.

He allowed his nurses to come close enough to him for a picture as long as one of them handed over her stethoscope. He gave his night nurse a run for her money when he decided he didn't want the IV both Saturday and Sunday nights. She did replace the one from Saturday, but decided to let him have his way on Sunday. Oh yeah, she remember him from 3 years previous.

Aiden got to come home today, but he is under quarantine for this week and has to stay under house arrest. So, he is on probation. We follow up next Tuesday and he can return to school on Wednesday, just in time for the last three days of school.

My Sick Little Boy

2011-05-13T12:10:00.000-05:00

Aiden has been sick this week. He has both strep and a sinus infection. So he's been staying home and in bed this week.

Spilling vs Dumping

2011-05-05T18:00:00.000-05:00

Today was Aiden's OT yearly evaluation. The head of occupational therapy for our private therapy company came over to ask a bunch of questions about Aiden's progress. One of the questions is "Can Aiden drink from a cup without spilling any?"

My answer was "Yes"

Chris was here also........

His reply was "No". To which I inform Chris that yes Aiden most certainly can. Chris responds with "I've never seen him do it." My response was "You're too worried about the carpet. Just because you have never seen him do it doesn't mean he can't."

So, I went into the kitchen and got Aiden's open faced cup out that we have been working on. And I put some iced tea in the cup. I hand the cup to Aiden, he takes a drink and doesn't spill any.

However the child did proceed to dump the rest out.

But my point is, the child drank from an open faced cup and didn't spill any. He deliberately dumped the remaining contents out. The OT evaluator happened to agree with me.

She also said that Aiden had made a lot of progress since last year's evaluation, met all his goals and will be getting a new set of goals this year. He climbed into the Mountaineer for her, adjusted the sun visor, attempted to put the Mountaineer into reverse, rode his bike, threw and caught a ball. She was impressed with him learning to brush his teeth and getting dressed. Those are skills we will be working on this summer along with potty training for tinkle.

She went on to say that he has out-grown the toddler stage and has went head first into being a child. She was impressed with his walking and I told her about taking away the gait trainer for the Buddy Walk last year. She did recommend more Legos. Really? Can't we stick with the Clippos? They are so much more friendly on bare feet.

She looked over his IEP and most recent progress report, which kind of surprised her. Because those are all skills he had mastered a few years ago. However, the child likes to manipulate, so the school OT doesn't think he knows how to do a whole lot of things.

In 21 days, the child becomes an official Kindergartener. Oh joy!

Hoops?

2011-05-04T07:00:00.000-05:00

Apparently, He Isn't of the Same Mind as Me

2011-05-03T16:19:00.000-05:00

Today, the weather has cooperated with going outside. So, Aiden decided to go for a bike ride. After the bike ride, he decided that he was going to give me a piece of his mind....

He opened the driver's side door to the Mountaineer and climbed in. Apparently, he thinks he is old enough to drive. HAHAHAHAHA! Momma doesn't think so.

Then he climbed over the center console and into the passenger's seat. HAHAHAHAHA!!! Momma laughed. Then he proceeded to pull the seat belt over his body and snapped it closed.

He will not win this battle. Not for a long, LONG time!

The Angels Among Us

2011-04-29T14:31:00.000-05:00

In the front yard is the remnants of a bird bath. Well, the stand is there, the actual bowl is um, don't really know. I haven't talked Chris into removing the stand yet. One project at a time, this month's project is getting the black Jeep that I used to drive sold.

Anyhow, back to the bird bath. Somewhere, at some time, there was a set of angels that belonged to the bird bath. I don't know where they were attached, but they were. Somehow. Those angels now are part of and protect the tulips.

Aiden is fascinated with these angels.

Nothing else in the front yard will captivate his attention more than these angels. As soon as he is free in the front yard, he books it straight over to the angels. And he will sit there and re-arrange the angels to his heart's desire.

2011-04-24T09:24:00.002-05:00

Why?

2011-04-21T16:12:00.000-05:00

In informal logic, a reason consists of either a single premise or co-premises in support of an argument. In formal symbolic logic, only single premises occur. In informal reasoning, two types of reasons exist. An evidential reason is a foundation upon which to believe that or why a claim is true. An explanatory reason attempts to convince you how something is or could be true, but does not directly convince you that's what she said that it is true.

In contrast to reason as an abstract noun, a reason is a consideration which explains or justifies. Philosophers often distinguish explanatory reasons from normative or justifying reasons.

Explanatory reasons are considerations which serve to explain why things have happened—they are reasons why events occur, or why states of affairs are the way they are. In other words, "reason" can also be a synonym for "cause". For example, a reason why a car starts is that its ignition is turned. In the context of explaining the actions of beings who act for reasons (i.e., rational agents), these are called motivating reasons—e.g., the reason why Bill went to college was to learn; i.e., that he would learn was his motivating reason. At least where a rational agent is acting rationally, her motivating reasons are those considerations which she believes count in favor of her so acting.

Normative reasons, on the other hand, are often said to be "considerations which count in favor" of some state of affairs. Some philosophers view these as the same as "explanations of ought facts". Just as explanatory reasons explain why some descriptive fact obtains (or came to obtain), normative reasons on this view explain why some normative facts obtain, i.e., they explain why some state of affairs ought to come to obtain (e.g., why someone should act or why some event ought to take place).

A common philosopher's distinction concerning normative reasons is between epistemic reasons and practical reasons. Epistemic reasons (also called theoretical reasons) are considerations which count in favor of believing some proposition to be true. Practical reasons are considerations which count in favor of some action or the having of some attitude (or at least, count in favor of wanting or trying to bring those actions or attitudes about).

WHY? For what? Which reason, cause or purpose? What unnamed goal?

In abstract, WHY? is the process of adapting to the business of existing. It's the searching for something clearly unreachable, with hopes of finding small significance along the way. It's the attempt to understand what's really going on by observing, neither by telescope nor microscope, but by naked eye, the intimate details in the most mundane of life's happenings. It's the need to describe the gist of the feeling of the tiniest modicum of The Great Universal Unutterable Joke we are all always not laughing at - except when we are.

Why must I go to bed?

Why must I eat that?

Why must I take a bath?

Why must I go to school?

Aiden is trying out his cognitive skills. With accuracy, I might add. And for every question of why, I give him an answer. I try to stay away from the easy, "Because I'm the mommy" answer. I give an explainatory reason as to why. He usually doesn't like the answer and I'll take a cussing, but.... we'll work on the attitude later.

2011 DSAT Easter Egg Hunt

2011-04-16T15:23:00.002-05:00

Picasso in Training

2011-04-07T19:49:00.000-05:00

I encourage artwork. I really do. As a younger person, I really loved art and art class. I never understood the directive art classes where I was told what to draw or paint or sculpt. I didn't think it was letting the creative side out. Sure there were a few projects I enjoyed, like drawing the Belvedere Mansion in the town where I grew up. It is located across the street from what used to be the old junior high where I was in art class drawing it. I did not take art in high school, but still pursued my interest in art.

Aiden has all sorts of drawing/colouring/art supplies. He will bring me his markers when he wants to colour and I hand him his paper. And he'll draw on several pieces of paper. Making sure he gets plenty of marker on himself in the process. Which is why I'm sure he loves to draw, he gets to go wash his hands afterwards.

Big Shoes to Fill

2011-04-06T12:49:00.000-05:00

It's a Zoo Out There

2011-04-03T18:46:00.000-05:00

Aiden was invited to a birthday party at the zoo a few weeks ago. The party was supposed to be today, but his little friend ended up getting sick this morning. Since we were already dressed and the weather was perfect, we went ahead and went. Aiden showed no interest in the animals except for the monkeys and meerkats.

The Colbert Report

2011-03-31T10:30:00.002-05:00

Well, here it is. Tim Shriver of the Special Olympics on the Colbert Report. I don't know if you watched it or not. I didn't. I refuse to watch the Comedy Channel.

I find it interesting that this was the platform used to promote "R-Word Awareness". Every freaking time the television gets switched to the Comedy Channel, someone is blurting out the r-word. Really? Chris loves to watch the Friar's Club Roasts on the Comedy Channel. I can't stomach it. Every single roast will contain at least one comedian hurling the r-word as an insult. I cringe; Chris changes the channel.

I find it hypocritical that the Comedy Channel will bleep out every other insulting word but the r-word? Nope, apparently it's not offensive enough to anyone other than those with intellectual disabilities and well.........

Why wasn't this done on a real news show?

A Cheese Sandwich without the Cheese

2011-03-30T12:39:00.000-05:00

Attachments

2011-03-26T11:21:00.000-05:00

Lately, Aiden seems to think we are attached. He's clingy. If he isn't walking though the house carrying something, he thinks he should be on my lap. I tried to fix supper last night, but he wasn't being cooperative. He didn't want to be with Chris and didn't want Chris to hold him either. Yeah, that was fun trying to fix Chicken Alfredo while holding a 28 pound 4 year old.

I'm not sure why he is being this way. He wasn't this way before Spring Break.

Next year, Aiden begins all day Kindergarten. I know, I got the enrollment forms from the school. And I filled them out. The child will go to all day school. I miss working. I really do. And I want to go back to work.

Will You "Let Us In"?

2011-03-21T14:44:00.002-05:00

Oh Mr Sun, Sun, Mr Golden Sun

2011-03-17T17:39:00.000-05:00

It's Spring Break and the weather outside is gorgeous. Aiden has been asking to go outside and swing all week, but the temperatures haven't exactly been Aiden friendly, until today. So after lunch, we went outside to play for a while.

Aiden is learning to walk outside on the uneven surfaces, but he is still unsure about doing it. He will hold my hand and managed to take about 10 steps unassisted, however his chosen method is still butt scooting or bear walking. Hmph....

We've had the play set for almost 2 years now. Aiden typically wants to swing in the special needs swing and will make a few trips down the slide. Today he decided that he wanted to try the sling swing out. AKA, the big boy swing. He did pick his feet off the ground, but didn't push off first. He'll get there. Of course, once he realized that there were a few puddles of water remaining, he bee-lined his happy little tail over to the water. Then he decided that he wanted to draw on the back deck with his outside chalk.

If you pay close attention, you can see Aiden showing off some of his signs. His speech therapist is teaching Aiden signing by using songs. Aiden his highly motivated by music and it's working. I decided to sing the Mr Sun song and Aiden signed along.

Do You Know the Muffin Man?

2011-03-16T13:37:00.000-05:00

Wearin' of the Tartans

2011-03-11T12:57:00.000-06:00

St. Patrick's Day is next week, but so is Spring Break. Aiden's teacher sent me a text yesterday letting me know that the school was doing their St. Patty's Day today. So, Aiden's kilt came out of the cedar chest and mine came out of the closet.

How to Entertain the 4 Year Old

2011-03-09T11:29:00.000-06:00

The Sickies

2011-03-08T20:39:00.000-06:00

Chris came into the bedroom last night, probably around midnight. I'm not really sure on the time since I was sleeping and didn't bother to put my glasses on to check the time. He said that Aiden was whining and he, for the life of him, could not get Aiden to stop crying. So, Aiden came into the big bed with me. Within 30 minutes, the child was attempting to puke and was running a fever. So I Motrin'ed the child and he was snoring in another 5 minutes. He did not wake up until 8:30 this morning and wasn't running a fever, but I called him in for school today. He spent the day acting fine and playing.

Chris, on the other hand, went to the doctor. He is trying to come down with pneumonia. He doesn't have a voice and so doesn't say much. He managed to get 2 prescriptions and 2 shots - one antibiotic and one steroid.

I took a 3 hour nap, but I'm feeling fine. :D

Hearing Woes

2011-03-03T20:33:00.000-06:00

After picking up the hearing aids from audiology on Tuesday and a non-participating child during the hearing test, Aiden wore his aids for 6 hours without messing with them.

Wednesday was a different story....

He wore them at school no problem. After school, the child decided he didn't like them anymore and disassembled one of them. Oh yay! Today, I had to take the child for another attempt at a hearing test and to have his hearing aid repaired. Even with bribing the child decided that he didn't want to cooperate with the hearing test. We scheduled another one for June once school is out. He hasn't worn his hearing aids today since I had to let the cement bond between the mold and the tubing.

He spent the day munching on popcorn, cheetoes, mac n cheese, french fries and a cheeseburger.

Spreading the Word

2011-03-02T15:39:00.001-06:00

Have you taken the pledge yet?

And in Aiden's World...

2011-02-28T16:23:00.000-06:00

I know I haven't updated since Happy Heart Day. That day we went to Dr. Pediatric Cardiologist and did our 6 month check up routine. After his EKG and echo and update his chart, Aiden sat in the floor of the hallway playing with the O2 machine. He's pretty good at checking his own O2 and blood pressure. Sad to say but true. Dr. Pediatric Cardiologist sat on the floor with him and checked him over. Yeah, talk about breach of HIPPA, but um, Aiden's life is already on the internet, so no privacy lost there. We talked about the event monitor, which didn't show anything. She was willing to stick him on a 30 day event monitor, which I talked her out of this time. If Aiden happens to have another episode, then he'll get the "shadow". This one will not come with a cell phone however. Ahh, new technology.

Aiden has been doing well in school. He's got a wrestling buddy in his class, which I'm sure he's loving that. Aiden's school PT informed me that Aiden has finally gained enough confidence in her to just walk beside her without holding hands. School OT wants me to bring in pudding or something similar to check his self-feeding skills. Aiden has them convinced he can't self-feed. I haven't fed him hand over hand in over a year.

There is a new found love of rice. Fried rice, steamed rice, Spanish rice. As long as it's rice, he doesn't care.

Hearing aids. They have finally came in from being repaired. Tomorrow we go in for a new hearing test and aid adjustment. I'm pretty sure I'm going to have a new battle getting him to wear the things after this long of being without. However, I do question whether or not he really needs them. Yesterday, he was in his room playing with his back to the door. I stood in the door way and whispered "Aiden" and he turned around and smiled.

His vocabulary is growing, though when you ask him what he wants, he'll reply with "one". One what? Then he'll tell me what he wants. Aiden will still mix signs with vocal words.

Aiden also thinks that candy is one of the five basic food groups. **Sigh** However since being off Pediasure, he'll now drink milk. (Which is how I'm getting the child's medications down him)

Naps. These have apparently become non-existent to the child. He desperately needs one on most days, but refuses to take one when offered. He sees nap time as a "search and destroy mission". I'm trying to figure out out how to convince the child that he still needs naps. Especially since spring is trying to overcome winter and my sinuses are wrecking havoc with my head. Spring Break is in 2 weeks, hopefully the child will overcome his stubbornness and a nap will prevail sometime in that week.

Happy Heart Day

2011-02-15T07:00:00.001-06:00

Has laid her son on an OR table and kissed him as he fell asleep. I have handed him to a surgeon knowing that they would stop his heart, and prayed it would beat again. I have learned more than I ever thought possible. And celebrated victories that I never would have thought of. I have walked a road I never knew existed. I will walk this road forever. I am a Heart Mom. - unknown.

I don't know who wrote the above, but I stole it from Becca at The Bates Motel. She posted it on her facebook profile. I "borrowed" it for today's blog post.

Happy Heart Day.

Today, four years ago, Aiden underwent his first open heart surgery. Though I didn't lay him directly on the surgical table. I handed him off to an anesthesiologist. I did kiss him and tell him how much I loved him. The surgical nurse would keep me informed of how surgery was going, all except bypass. I didn't want to know when my child's heart was going to stop beating. I did pray that his heart would beat again, though it didn't. Not on it's own. Not for 5 days. For 5 very long days, Aiden was hooked up to an artificial heart, lungs and kidneys. ECMO.

I have learned more than I ever thought possible. Through the course of 2 OHS's, I know how to work monitors and pumps. I have had my crash course in both nursing and cardiology. I know more medical terms than I care to know. Aiden's heart has been basically rebuilt from scratch. A good portion of it has been re-created by his surgeons.

I have celebrated 1460 Happy Heart Days since that day 4 years ago. Days that I know I should not have had. You see, Aiden was not supposed to have survived. His surgical team could not give him the prognosis of 95% chance of survival as is common with defects similar to what Aiden has. Aiden had only a 3% chance of surviving. We celebrate everything here. Words, steps, school, imaginative play, handwriting. Things that a lot of parents take for granted. I can't take those things for granted. Even sitting here typing this, my throat gets tighter, the lump gets bigger, the tears start flowing and my "heart" hurts for his.

Yes, I still say Aiden "has" heart defects. For the rest of his life, Aiden will be a "heart kid". As long as he lives, he will see a cardiologist every 6 months at minimum. Any procedure, even one as simple as ear tubes, is more complicated because of Aiden's heart. Special precautions have to be taken at all costs. Dental cleanings even. Several years ago, the dental association and the cardiac association changed their guidelines as to antibiotics before dental cleanings. Nope, not for Aiden. His dentist, who specializes in children with special needs isn't even qualified to put caps on Aiden's teeth. We have to see another dentist for that. Yep, that's how complicated it is. As Dr. Pediatric Cardiologist puts it... "well, it's Aiden's Heart".

For most heart moms, a year or two after their child's OHS, the battle is won. They get to hear the wonderful news of "see you in a year". I'll never hear those words. I wanted to. But I won't. Ever. I know that yet another OHS looms in the future, for valve replacement. His valves have been repaired, twice. But that was more like putting duct tape over a leak. Those leaks are still there. We're going to have to fix them sooner or later. Hopefully, not for a really long time, but that's not for me to determine. If it were up to me, we wouldn't need another surgery. Not now, not ever.

I don't have those warm, fuzzy feelings about my child's open heart surgery, I probably never will. It's like that first OHS opened a can of unknown content. One that keeps opening up every few years. Yes, Aiden was given back to me, but with conditions. Aiden's heart is too complicated.

Yes, this is a road I will continue to walk. I didn't ask for this, but it's what I got. I got what God thought I needed. And I'm fine with that. I always have been. At least I keep telling myself that.

2011-02-14T12:41:00.000-06:00

Somewhere…someplace… today…

A family is waiting to hear…

Is something wrong with their baby?

...The answers aren’t quite clear…

This family has entered an unwanted world…

And they just don’t know what to expect…

Somewhere…someplace… today

They first heard the words: heart defect.

And how they hoped this was not true…

And thought… this cannot be…

I too… know just how this feels…

For one day…this was me.

Somewhere…someplace…today…

A man and a woman embrace…

Their baby is in surgery…

They long to see her face…

They haven’t got to hold her yet…

Without…a cord or line…

They pace the room awaiting news…

And hope she’ll be just fine.

Prayers fill this busy waiting room…

And mom and dad are scared…

Somewhere…someplace..today…

The tiniest hearts are repaired.

Somewhere…someplace…today…

A child’s growing fast…

Smiling,laughing,thriving…

His mom thinks…can this last?

It’s almost easy…to forget…

That anything is wrong…

Somewhere…someplace..today…

Her child seems so strong.

Somewhere…someplace… today…

A little boy fights…just to live

A father holds his tiny hand…

His love…all he can give…

The doctor’s are all baffled…

They fear that he might die…

Somewhere…someplace…today…

A family says goodbye…

Somewhere…someplace…each year..

More than 40,000 families will see…

What it means…when something’s wrong…

They’ll face a CHD.

Today…for just a moment…

Stop…remember…reflect…

Make time to tell someone you know…

“I’ve been changed by a heart defect”.

Author – Stephanie Husted

It Only Took a Month....

2011-02-10T18:13:00.000-06:00

But I finally heard back from Dr. Pediatric Heart Electrician. Just got off the phone with him, in fact. Yeah, I know it is late, but better late than never, right?

Anyhoo, from the result of the event monitor, he can come to no specific conclusion as to why Aiden was having episodes. He didn't see any long runs of A-Tach and the pacer is working as it should, so no runs of v-brady. So, we're on a "wait and see" type thing. Oh, and keep on our 6 month schedule unless something happens.

So, there's the mystery.

We see Dr. Pediatric Cardiologist on Tuesday. Yeah, that Tuesday. The one I don't want to see anyone associated with Aiden's heart at all on that day.

Congenital Heart Defects Week

2011-02-09T20:25:00.001-06:00

Ahh, February. The month of love. Hearts are everywhere in preparation for Valentines Day.

For me, and other "heart moms", the week before Valentines Day signals the beginning of CHD Awareness week. All over facebook land, I've been seeing profile pictures depicting this week. Every day 96 babies are born with a CHD. That's one every 15 minutes. More children die from CHD's than all of the childhood cancers combined. Yet, CHDs get a fraction of the funding and awareness that cancer does.

I haven't posted anything on it until today. I even changed the blog to a "heart theme". It hasn't slipped my mind, but I tend to not want to think about it.

Now, don't get me wrong. I'm all for CHD awareness, just not this week. It's a blatant slap-in-the-face reminder that 4 years ago, my child's chest was cut open and all hell broke loose. Yeah, I really don't like that reminder. I remember all the anxiety, the tears, the fears, the questions. And as I got to thinking today, every 2.5 years my child undergoes another procedure where his doctors want to crack open his chest and play with his heart. July will mark the 2nd anniversary of his pacemaker surgery....

Chris was watching a show the other day and they were highlighting a SuperBowl commercial with a child sized Darth Vader.

The child in the commercial is a 6 year old with a CHD and a pacemaker. He's never seen any of the Star Wars movies, and did his "research" online.

A Day Out

2011-02-07T20:18:00.000-06:00

Seriously! We spent the day out of the house!!! Aiden was supposed to go to a follow up with Dr. Eyes last week from his visit a month ago, but because of Snow Hell, the office closed. And even if the office hadn't closed, there was no way I was driving anywhere in a foot of snow. The appointment was rescheduled for tomorrow. However, apparently yet another blizzard is coming at us. Anywhere from 6 - 18 inches more. Oh yeah! For those of you who have read the blog or befriended me on Facebook, you know my love of snow. :D

So, Dr Eyes' office called today and asked if I could bring Aiden in this afternoon. Sure, why not. When Chris woke up I informed him of the need to go to Tulsa and he got dressed, Aiden got dressed and out we went. Now for the most part, the roads are cleared - everywhere except the 3 streets leading into my neighbourhood. See, this is my luck.

First we stopped at PetSmart. Chris needed to get some fish food for the huge tank and he decided to buy Millie and Willie a ball that they can roll around on the floor in. Millie seems to like the new found freedom, but there is a problem with the ball. Chinchillas poop. A lot. And that poop escapes through the air slots on the ball. So, the vacuum had to come out.

Then we went to Gordman's. Aiden got two pair of jammies and I got some intimates. Chris decided to go to the electronics store. Which by the way has just filed for bankruptcy, so stuff is cheap. I do see a new set of floor speakers finding a new home within the next week. I have my preference, Chris has his. We'll see who wins.

Then off to Dr. Eyes. The pre-sty has cleared up and Dr. Eyes said that if it happens again, just use a warm compress. Oh, Dr. Resident from the CT Scan was there following along and she remembered said Little Boy. Why is it that happens to us A LOT? He also said to bring Aiden back in a year for his yearly exam. This year, no glasses. I'm not sure how the child escaped my ~~blindness~~ near-sightedness. But he has, so far.

We then went to Walmart so Aiden could see his girlfriend. A few weeks ago I informed Chris that we needed a new deep-dish skillet for his beloved fried potatoes. Well, he found a T-Fal skillet at our local store, for a really good price. And they had a 10 piece professional set on clearance for $59. Which we got that also. So basically all my pots and pans have been replaced. Also, my printer has been replaced - or well is going to. I just bought new ink for it, so we'll have to use that up before hooking up the new wireless printer. New pillows were bought, though we still need to find replacement body pillows. Those are apparently non-existent at Walmart, so I'll have to try Target or Bed, Bath and Beyond.

By this time, the child was getting agitated. So, time to pay for our crap and head to the pharmacy. As long as the child is in motion, he seems to be doing fine. Stop anywhere though, and his attention span goes from 60 down to 5.

We got home, unloaded the Jeep. I checked my email for the dreaded "school closing notification". At 5pm, that email had not been delivered. I went and got my nails did. When I got home an hour later, the email was in my inbox.

Dang!!!

Slow Melt

2011-02-06T21:03:00.000-06:00

The snow is gradually starting to melt. Yesterday's temperature reached 42* which was enough to melt part of the snow on the driveway and all of the monstrous icicles hanging off of the house. I joke you not, we had one outside of the bedroom window that was 4 feet long! I spent sometime outside taking pictures.

outside the bedroom window

really liking the sports setting on the camera.

outline of Aiden's sandbox

Aiden's beloved slide

snowball anyone?

thought this would be a really cool picture

icicle curtain on neighbour's house

I made Chris take me and Aiden to the store just to get out of the house. Walmart is completely out of everything, but I didn't care. Still spent money on crap we really didn't need.

The main roads are pretty much cleared. There is one road around the corner that is curved. Apparently, that is the road the idiots decide to take since daily cars are being eaten by the ditch on either side of the road. I'm not really sure why the town's street department doesn't block it off. Earlier tonight the sheriff's deputy who lives around the corner from us got stuck in psycho neighbour's yard. That was entertaining. Chris went out and helped her get her truck out.

I got the email notification that school will again not be in session tomorrow. Honestly, I think it would be a lot less time consuming if they sent an email out for when school will resume. But I don't think the Little Boy will be returning to school this week. We're scheduled for more snow on Tuesday.

Aiden is tired of being cooped up. He still doesn't want anything to do with the snow, but he's tired of being inside. And his attitude and actions are reflecting that. I can completely sympathize with Jack Nicholson's character in The Shining. I'm about to lose it myself. I can also understand why some species resort to cannibalism. What I don't understand is how people in northern Canada and Alaska live like this. I have come to the conclusion I could not do it for more than 2 weeks. Hopefully, I wont have to.

My nook is newly stocked with fresh books thanks to a coupon from groupon.com. $10 got me a $20 gift certificate for Barnes & Noble. I downloaded 7 new books today. I have 40 on there that I have yet to read though. I think I'll be skipping the one with polar bear in the title for the time being. I have a feeling that the paw prints I saw in the front yard belong to one of them. LOL!!! No, just kidding. Probably one of the neighbourhood stray cats chasing after the birds.

Speaking of birds, the dog has gone into hunter mode during Snow Hell. Apparently some birds thought that they would get out of the snow by residing in our sun room. I noticed the dog had one in his mouth while trying to catch another one the other day. He's a schnauzer for Pete's sake! I tried telling him that he would have to drop the one to catch the other. He didn't listen though. I guess you can't reason with a dog.

Snow Hell

2011-02-03T19:05:00.000-06:00

Blizzard. Snowpocalypse. Snowmaggedon. Snowklahoma. Snow Hell, that's what I've resorted to calling it. Day 3 of nothing but white (oh and btw, it's no longer fluffy - it's frozen solid now!) and more white.

Chris went out and dug out his work van and played musical vehicles. The Mountaineer was in the driveway behind the Jeep, but Chris had to dig his Jeep out yesterday to make a much needed trip to Walmart for diapers. The Mountaineer ended up plowing through the mountain of snow and parked in the front yard. Today, the Mountaineer is parked back in the driveway with the work van behind it and the Jeep parked next to the road. I can finally see the walkway, he was nice enough to shovel all that snow so I would be able to feed the cardinals.

Chris is on normal work schedule tomorrow, but I'm not convinced that is actually going to happen. We went out to eat tonight and the roads are really really bad. I wouldn't recommend anything other than a 4 wheel or All Wheel Drive based on the number of small, 2 wheel drive vehicles that were stuck in ditches and drifts. The local police department even borrowed the fire department's SUVs to get around in. The ride was bumpy, even in the 4X4, however Aiden laughed all the way to the restaurant. At least he enjoyed the ride. And 2 bowls of salsa and a side of rice.

You can tell where the town officials said to plow the roads, even the residential ones, but not much of a dent was made. Only one pass was made and I think we had too much snow for the plows to actually reach the road tops. **Sigh**

Another snow day tomorrow for Aiden. At this rate, he'll be in school until June. There is no keeping my living room clean, he gets into everything the second after I picked something else up. For lunch today, I was in the kitchen making something and he was at his play kitchen "cooking" right along with me. Then he remembered the Cheetoes. And then he discovered the dog food, which I made him clean up. He's getting bored, but there isn't anything much to do being snowed in. He won't go outside and play in the snow. Can't say I blame him though. His therapists are snowed in also, so no therapies.

I am ready for summer to get here already. Enough of this stuff.

Sorry, We're Closed

2011-02-02T09:49:00.000-06:00

Highways, turnpikes, schools, businesses. Even the malls! We had a record amount of snowfall yesterday. Tulsa received 14", Owasso and Claremore both checked in with 20". My front yard - up to 18" of fluffy white stuff.

And that doesn't include the humongous snow drifts. Chris Jeep is buried under a couple of feet of snow. My Mountaineer can be seen, but I'm sure it's not going to make it over the mountain of snow located directly behind it. I don't think Mercury actually intended for the Mountaineer to go through a mountain.

The Governor declared a state of emergency and enlisted the help of the National Guard. ODOT (Oklahoma Department of Transportation) is attempting to clear the highways, the problem is the on ramps/exit ramps are being blocked by stranded and snow bound vehicles. And the highways have pretty much become parking lots.

The dog can't get around much outside, so he's pretty much staying in his bed. Yesterday, he got stuck in the outer reaches of the back yard and had to kick it in 4 Paw Drive to get out. It was funny, but then I had to feel sorry for him as the snow is taller than the dog is.

Chris opened the front door and asked Aiden if he wanted to go outside and play. Aiden promptly shook his head and said "no" before turning around and booking his happy little tail down the hall. I opened the door once while it was still snowing and the child looked up at me and shut the door. He isn't, however, trying to go into the garage and talking me into riding his bike or going outside to swing. Pretty sure the snow drifts are taller than the child is, and he realizes this.

We're expecting a little more snow on Friday. And then a melt down on Saturday and Sunday. We can hope, right?

Oh Snow!

2011-02-01T11:37:00.000-06:00

On Saturday, the local weathermen were predicting a blizzard. In Oklahoma. The weather was 78* on Saturday. Aiden and I were both wearing t-shirts and shorts.

Yesterday, I received an email alert at 4pm that our local schools were going to be closed today for the blizzard. Okay, so I let Aiden take a long nap. No biggie, the later he stays up, the longer we sleep in.

About 11 pm last night, the thunder and lightning started. I could hear the sleet and freezing rain hit the windows.

This morning.....

Did we move to the far north part of North America overnight?

It's still coming down.

Stirring the Proverbial Pot

2011-01-27T18:08:00.000-06:00

Sorry, this is going to be LONG!!!

Last year, the state of Oklahoma House of Representatives and the State Senate decided to pass a new law on special education. HB3393, aka the Lindsey Nicole Henry Scholarship for Children with Disabilities Program.

If you don't want to read it, basically the new law states that parents of children with special needs now have a choice in which school, public or private, they want their children to be educated in. And the parents have the right to have the private education (if so chosen) to be paid for by the public school district in which they reside, up to a pre-determined amount of money set forth by the state.

This act shall be known and may be cited as the "Lindsey Nicole Henry Scholarships for Students with Disabilities Program Act".

The Lindsey Nicole Henry Scholarships for Students with Disabilities Program is established to provide a scholarship to a private school of choice for students with disabilities for whom an individualized education program (IEP) in accordance with the Individuals with Disabilities Education Act (IDEA) has been developed. Scholarships shall be awarded beginning August 26, 2010, when the law becomes effective, for the 2010-2011 school year.

The parent or legal guardian of a public school student with a disability may exercise their parental option and request to have a Lindsey Nicole Henry Scholarship awarded for the child to enroll in and attend a private.

QUALIFICATIONS FOR PARENTS AND STUDENTS

The student must have spent the prior school year in attendance at a public school in this state. "Prior school year in attendance" means that the student was enrolled in and reported by a school district for funding purposes during the preceding school year.

The parent or legal guardian has obtained acceptance for admission of the student to an eligible private school and has notified, in writing, the school district of the request for a scholarship at least sixty (60) days prior to the date of the first scholarship payment.

Only school districts within the state of Oklahoma can be accredited by the State Board of Education. No out of state schools are eligible to participate in the scholarship program. (Administrative Rule)

When a parent of an eligible student requests a scholarship, they must notify the district of residence. The district of residence is defined as the legal district of residence, unless the child is a child with an IEP who has been on a transfer of any kind for three consecutive years, in which case the district is then defined as the receiving district. (Administrative Rule)

The scholarship shall remain in force until the student returns to a public school or graduates from high school.

If the residence of the student changes, the district of residence shall assume responsibility for the scholarship.

At any time, the parent or legal guardian of the student may remove the student from the private school and place the student in another private school that is eligible for the program.

IF A STUDENT IS ON WAITING LIST AT A PRIVATE SCHOOL

If the parent or legal guardian requests a Lindsey Nicole Henry Scholarship and the student is accepted by the private school pending the availability of a space for the student, the parent or legal guardian of the student shall notify the school district sixty (60) days prior to the first scholarship payment and before entering the private school in order to be eligible for the scholarship when a space becomes available for the student in the private school.

RESPONSIBILITIES OF PARENTS AND STUDENTS

Lindsey Nicole Henry Scholarship Program participants shall comply with the following:

a. the parent or legal guardian shall select the private school from the approved private schools and apply for the admission of the child,

b. the parent or legal guardian shall request the scholarship at least sixty (60) days prior to the date of the first scholarship payment,

c. any student participating in the scholarship program shall attend throughout the school year, unless excused by the school for illness or other good cause, and shall comply fully with the code of conduct for the school,

d. the parent or legal guardian shall fully comply with the parental involvement requirements of the private school, unless excused by the school for illness or other good cause, and

e. payment shall be made by the school district with an individual warrant made payable to the parent or legal guardian of the student and mailed by the school district to the private school that the parent or legal guardian chooses. The parent or legal guardian shall restrictively endorse the warrant to the private school for deposit into the account of the private school.

Payments will be made to the private school on a quarterly basis upon verification of continued enrollment and attendance at the private school. Payments will be made in arrears, following the completion of each quarter. (Administrative Rule)

A participant who fails to fulfill these responsibilities forfeits the scholarship.

TIMELINE FOR CALCULATING THE SCHOLARSHIP

Within ten business days of receipt by the public school district of the parental request the State Department of Education must receive from the public school a request form for a determination of the calculation of the maximum scholarship amount. (Administrative Rule)

The State Department of Education must provide the calculation of the maximum amount of the scholarship to the public school in writing within fifteen business days of the receipt of the request. (Administrative Rule)

The parent shall be notified of the maximum amount of the scholarship in writing in a timely manner, not to exceed thirty business days from the request. (Administrative Rule)

Scholarship amounts will be calculated at the time of the parental request, and annually thereafter, and will not change during the course of the school year. (Administrative Rule)

HOW THE SCHOLARSHIP IS CALCULATED

The maximum scholarship amount shall be calculated by the State Board of Education for each year the student is participating in the scholarship program.

The maximum scholarship granted for an eligible student with disabilities shall be a calculated amount equivalent to the local and county revenue for the school district which is chargeable in the State Aid formula, state-dedicated revenue, and state-appropriated funds per weighted average daily membership generated by that student for the applicable school year. The weighted average daily membership shall be determined using the grade and disability weights only.

The amount of the scholarship shall be the amount calculated by the State Department of Education or the amount of tuition and fees for the private school, whichever is less, minus up to five percent (5%) of the scholarship amount which may be retained by the school district as a fee for administrative services rendered.

Pretty good idea, if you ask a parent of a special needs child. However, if you ask several of the school districts in the northeastern part of the state, it's unconstitutional. Why? Because....

"House Bill 3393 uses public dollars to pay for scholarships to private schools, like Tulsa's Town and Country , for special needs children.."

Umm, okay. The problem with this is that the public school systems receive both state and federal monies to provide an education to children with special needs. And they aren't using the monies to pay for the education. Two of the school districts involved in the dispute are schools that have been recently sued for breach of IEPs. One of those two schools is repeatedly threatened or actually hit with a lawsuit for violations.

Okay fine. If you don't want to educate these children, let them go to another school that will. Plain and simple. The schools don't like this idea because, well, they lose money. Obviously, the funds that are given to them aren't being used if breach of IEPs are constantly being hung over their heads. So, why not use the money to give to another school? Oh yeah, football teams may not be able to pay their "ringers" for those oh-so-desired State Conference Championship titles! How silly of me to forget that. More money is put into athletics programs than actual academics in the state of Oklahoma. Joke you not, we are ranked at 47th in the nation of schools. Give us a hand here folks, we're the 3rd worse in the nation!!! We're pretty crappy at teacher pay also ranking in at #47. That takes a lot of talent. But yet, we have some of the best high school football teams in the nation.

Take away money from athletics, you say? Not only no, but HELL NO!! Uh uh, can't do that! I mean only less than 1% of high school athletes actually make it to the pros, but gotta give them a chance. They might actually do something in society, unlike "those kids". The kids in school don't make fun of the athletes. Just "those kids". It's "those kids" who disrupt class and make learning difficult for the other kids. You know, the ones in special education.

This was actually a comment that I read today on one of the local news websites regarding HB3393. Well, alrighty then. Lets send all the special needs children to a whole special school of their own. (Yep, another comment from one of the non-compliant school districts.) Where the teachers actually know what to do with "those kids".

The way I see it, there was no actual need for this law to even be thought of. Honestly, there wasn't. Had the school districts been doing the LEGAL thing according to IDEA, this never would have been conceived. However, due to misappropriation of funds and breaching a few IEPS, the school districts have brought this upon themselves. The state was actually trying to do these school districts a favour by saving them millions of dollars in legal fees, fines and $$ paid out to parents who sat through hours and hours of headaches.

So now, the non-compliant school districts are suing the state Attorney General. Huh? Really? Why? Oh yeah, HB3393 is unconstitutional.

Well, so is denying these kids with special needs an appropriate education.

And no, Aiden's school is NOT one of those who are choosing to deny any child an education. I am proud to say that.

Milkshakes and Alopecia

2011-01-24T12:20:00.001-06:00

Aiden had an appointment with Dr Pediatrician this morning for his ER visit. Since he's not had any issues since then, she checked him over. We discussed his weight. She is now comfortable with his current weight and feels that we can take Aiden off the Pediasure. Aiden isn't quite 30 pounds yet, but he's height isn't keeping up with his weight. No more "milkshakes". The Little Boy is going to have to come up with some other way to ingest his medications.

We're also getting a referral to Dr. Skin for his Alopecia Areata. While Alopecia is common in children with Down syndrome, Aiden has a few spots (mostly on the left side of his head) and he has another spot where the hair is thin. I'm not ready to shave his little head. I'm vain. So, we'll go see what Dr. Skin has to say and offer.

As we were finishing up the appointment, Aiden handed Dr. Pediatrician her stethoscope and told her thank you for letting him play with his.Actually, it was more of a whisper, but it was verbal and not signed.

Cooped Up

2011-01-22T17:14:00.001-06:00

On Wednesday, Aiden had an appointment with his audiologist. His hearing aids are in need of new molds and an adjustment. He "helped" with the molds, however his actual hearing aids had to be sent back to the manufacturer for a tune up. Hopefully, he won't be without his "ears" for too long.

Wednesday night, Old Man Winter decided to let us know that he isn't finished with us. It iced and it snowed. Enough that at 6am Thursday morning, the public school system's automated calling system called the house and informed me that Aiden's presence in school was not required.

Aiden did have an appointment with Dr. Pediatrician in regards to his visit to the ER. But, um, I do not drive in snow and ice. The appointment was rescheduled. He spent the day playing dress up instead...

Yes, the Little Boy is wearing one of my t-shirts. At least he is trying. He also decided that he wanted to learn how to take pictures.

Forgive the hair, it was in dire need of attention from my stylist. Which it received today.

The sofa.

After a long day of no school, raiding my dresser, no therapy or naps, the child passed out early.

We finally ventured out of the house on Friday (once I could see something that resembled grass poking out of the melted snow). I think the child was happy to get out, even if it was just a trip to Walmart, Atwoods (which, btw, the only reason we went to the redneck store was for bird seed and they happened to be out of stock) and the bank.

Aiden has been kind enough to let me sleep in these last few days as long as he is attached to me in the big bed. Oh well, I'll take that over getting up at 5:30am because he decides he's had enough sleep for the night.

Today I took him to the hair salon, which he didn't want to go. He was fine once we got there and remembered the play area and discovered that I had a bag of Cheetos in my purse.

Cookie Monster

2011-01-19T16:44:00.000-06:00

For more Wordless Wednesday, click here,

First Trip to the Panda Hotel

2011-01-14T13:24:00.001-06:00

The past week, Aiden hasn't quite been feeling like his typical self. On Monday when we picked him up from school, he had red rings around his eyes. But other than that, he was himself attitude wise.

When Chris took him outside to play in the snow, Aiden fell over backwards while just standing there and bopped his head on the ground.

Tuesday, Aiden started going downhill. He had been vomiting and really not being himself. He was wanting to go to bed early and taking naps. Yesterday Aiden did not want touched, didn't want to get in his car seat or go to school. During PT, his therapist mentioned that Aiden was just not right. He already had an appointment with the ophthalmologist for the red around his eyes. So, I called an made an appointment with Dr. Pediatric Cardiologist (for next week) and Dr. Pediatrician. After the ophthalmologist, we went by my mom's to wait for the appointment with Dr. Pediatrician. Aiden laid in her floor and puked. And just laid there. He didn't move, didn't want to do much of anything.

When we got to Dr. Pediatrician's office, we ended up seeing one of the Physician's Assistants. She diagnosed Aiden with an ear infection. Ummm, the child has had a few ear infections and he never acted like this. She wanted to run her diagnosis across one of the supervising doctors. And the PA came back with .....

"Well, we can't rule out a head/neck injury. So we have two options. He can either get admitted for a CT Scan or take him to the emergency room for a CT scan."

Yeah! The child needs a scan.

It's much faster to go to the emergency room and get the scan done than to be admitted and wait for the CT scan to become available since obviously the emergent patients are going to get priority service. Off to the emergency room we went.

When we got there, verified his information with the admission nurse, 'cause well... it's Aiden. He's on a first name basis with pretty much everyone there. While he was getting his vitals checked the admitting nurse went ahead and ordered the CT Scan so that we wouldn't have to wait to be seen by the doctor on duty and then get the scan.

He went immediately back to imaging. Where it took myself and two other people to strap the 26 pound child into the bed thingy. Low muscle tone my foot.

After the scan was completed, we went back to the exam room and waited for the nurse to come in. Then the resident doctor came in. Then we met with the attending physician. Yep, Aiden requires a whole team.

Fortunately, the scan came back clean. But since he vomited in the exam room, he was given Zofran to help with the nausea. Then we were going to give him some juice, but he threw up again. This prompted the doctors to hold a pow wow and order abdominal xrays. Those came back clear, so he was finally given some juice which he kept that down. The doctors at the hospital diagnosed him with a viral infection, but not an ear infection and he was sent home for the night. We follow up with Dr. Pediatrician next week.

Today, Aiden seems back to his normal self. He's been drinking a lot and he's been on the BRAT diet, but keeping everything down. He's been laughing at his television shows and dancing.

Waiting in the Cold

2011-01-12T14:28:00.000-06:00

Last Wednesday I unhooked the event monitor from Aiden and put the sensor, cell phone, additional batteries, charger and sticky things in the box and put them in the pre-paid envelope. On Thursday I mailed it off to the company to reading and the results to be sent to Dr. Heart Electrician. We haven't heard back yet, but Nurse Laura said if I haven't heard back regardless by the end of the week, to call Dr. Heart Electrician and get the results. Dr. Pediatric Cardiologists isn't too concerned at the moment, but the results will tell.

And then we got hit with an Arctic blast that brought snow on Sunday. The snow melted for the most part on Monday, but then another round of snow was sent our way. However the temperatures refuse to get above 25* for a high. And we're under a wing chill advisory, so our mornings are more like -5* and the rest of the day between 0* and 10*. The child can't go outside to "swing" though he has been signing relentlessly, the dog can't stay outside because well..... And I can't do laundry because the drainage system on the washer is frozen. My Mountaineer doesn't even want to start in the mornings because it is so freaking cold. Obviously I need a new battery. Yeah, that will have to wait until warmer temperatures this weekend. Friends in the northern part of the US are bragging about getting our warm weather. Mother Nature apparently hasn't recovered from her New Year's Eve bender.

Chris decided to take Aiden out in the snow on Monday. He wasn't too happy with that concept. As you can tell, he's signing "finished" and was more than ready to go back inside.

Old McDonald Had a What?

2011-01-03T15:05:00.000-06:00

A few months ago, Aiden got a complete set of sound puzzles by Melissa and Doug. And the child really really really likes them. Daily, I hear the child get into the puzzle storage box and remove whatever puzzle(s) the child wants to play with.

One of those puzzles has musical instruments and the sound those pieces make is the song "Old McDonald Had a Farm". Okay fine. However, today the child got out his train puzzle also. As I'm sitting at the computer, I hear the instrumental version of Old McDonald on several different instruments and it gets to the E-I-E-I-O part. Well, then the child pushes the button on the train puzzle.....

Old McDonald had a farm. E-I-E-I- Choo Choo?

Reflections and A New Year

2011-01-01T20:17:00.000-06:00

2010. Another year behind us and another one beginning.

In January, Aiden got the referral for his hearing aids. He lost the seat to his gait trainer and imaginative play came into focus.

February brought us new friends within the Oklahoma Family Network and regular visits with Dr. Pediatric Heart Electrician. And Aiden was inducted into our local school's Tiger Cub Club by winning Tiger Cub of the Month.

In March we celebrated another Spread the Word to End the Word and World Down syndrome Day. Aiden wore his kilt to school, went to his first DSAT Easter Egg Hunt and we began the battle over his hearing aids.

Aiden got new orthotics in April and celebrated Easter. I lost a very close friend, one of whom I will miss dearly.

In May, Aiden took his first independent steps. Although he did have to be bribed with a bottle of Pepsi.

June decided to bless us with our first ear snot invasion and a new set of ear tubes, a bounce house and even more independent walking.

Aiden decided that July was a good time to learn how to vacuum (as long as the vacuum doesn't come to life while no one other than Aiden is near it). We celebrated the anniversary of OHS #2, we "met" Karen Hollet, a Canadian author and learned Aiden does not like the big booming fireworks.

August brought me a 4 year old who began Pre-K. And another Tiger Cub of the Month.

September rang in the Fall Festival and Aiden's first amusement park ride, butt pop dance, sweeping the kitchen floor and Happy Meal.

In October, Aiden was implored to meet my deadline of walking independently. He had to walk the track for our local Buddy Walk. He did. The gait trainer went bye-bye. Red Ribbon Week, brought us a week full of dress up days at school. Aiden also had his first field trip at school and riding the school bus.

November brought us another round of ear snot and a sick child the week of Thanksgiving. And a child who began the typical behaviour of talking back.

December was full of Christmas and Santas. A trip to Dr. Heart Electrician and a cell phone.

2011 is looking just as promising as I caught the child putting SpongeBob in one of his chairs and "feeding" him.

A Post Christmas Post

2010-12-29T19:50:00.001-06:00

On Christmas Eve, we had dinner and gifts with my family. Then we headed home so that Aiden's gift from them could be assembled and played with before bed. Aiden just had to help me assemble the thing to make sure I was doing it up to his satisfaction.

Aiden fell asleep on the sofa and once I knew that the child was actually asleep enough to move him, he went to bed. Then Chris and I helped Santa "deliver" the gifts. They had been stashed in the garage and the garage was completely off limits to the child. I learned my lesson last year. No presents under the tree (which didn't come out of the garage until the week before Christmas and only fell victim to the child on the first two days).

Chris had volunteered to work Christmas Day, so I woke Aiden up at 6:30 to open a few gifts before Chris had to leave. Of course, the first thing Aiden saw was the Power Wheels Jeep. He opened his Hot Wheels presents and his Alphabet Apple. Chris then went to work and we had planned on leaving the rest of the gifts for later that day. Aiden, however, thought one more needed to be opened and so he opened the present containing the remote control Corvette. The one Chris wanted to wait to open and then chase Aiden throughout the house with.

When Chris got off work, we headed to his mom's house for Christmas there. Where Aiden was only interested in festivities for the first gift. Then he realized that Grandma Nise had gold beads sitting on the table within arm's reach of the child. That pretty much occupied him the entire time we were there.

Once we got back to the house, the child decided that he wanted more of Christmas gifts and immediately started ripping paper off the rest of his gifts. By this time, the battery for the Corvette was fully charged and Chris proceeded to chase the child throughout the house with it. I don't think the child liked that idea too much.

Make video montages at www.OneTrueMedia.com

On Sunday, we loaded up into Chris's Jeep and headed to Tulsa in the direction of the mall. One would think that traffic would have been horrendous, but it actually wasn't. We were in and out of the mall in less than an hour and then went to breakfast. With Aiden's new monitor, I have learned not to travel without additional batteries. In the middle of breakfast, he needed a battery change. I have also learned how to reset the program when it doesn't want to send a transmission. However, the company will call when they receive more than one transmission regarding multiple events in less than a day. Yeah, we found that one out on Monday.

A 4 Year Old with a Cell Phone

2010-12-23T15:02:00.000-06:00

Yesterday we took our trip to Oklahoma City to visit with the pacer clinic and Dr. Heart Electrician. I've had my reservations about making this trip. Something just wasn't sitting right with me. Aiden has been having minor "blue spells" where his lips and nose area turns blue for a moment or his hands turn yellow in colour and then return to normal colour.

When I mentioned this to Dr. Heart Electrician, he was concerned. Really didn't know what was up with that either. Aiden's O2 numbers have been normal, so his sats aren't dropping. But it could be the result of a circulatory issue. So he prescribed this....

The Life Watch ACT III Platinum edition, complete with a cell phone. The device hangs around Aiden's neck with leads attached to his body and it sends information to the cell phone which in turn sends the information directly to Life Watch. And it transmits ~~several times a day~~. constantly. Yeah, really. Aiden can not be more than 10 feet away from the cell phone at any given time. Have you ever tried to keep a 4 year old contained in a 10 foot radius? Let me tell you, that doesn't happen. The damn thing beeps and chirps relentlessly letting me know that a lead is off or it's needing a new battery or the cell phone needs charged or Aiden gets out of range. I've been on the phone with the company twice already. Fortunately, the cell phone can not make calls unless it is to Life Watch or 911. Hopefully the police do not show up at the front door any time within the next 13 days.

Would You Consider

2010-12-19T10:30:00.000-06:00

Taking a 4 year old on a shopping trip that lasted 8 hours?

I did.

Yesterday.

To the mall.

And he did really well, considering that the child threw every single fit he could manage to throw before we even made it out of the driveway. He even made a few new "friends" in JC Penny. There were no melt downs and he snaked on his Funyons and iced tea.

Then we took the child to Walmart. This is the interesting part of the story. In the next town over, right off the turnpike is a new Wally World. We haven't been to this one yet, so we decided to go there and pick up a few gifts. As soon as we walked in the door, Aiden was approached by the door greeter who was handing out stickers. Aiden isn't too fond of stickers and definitely doesn't want to wear one, he'll hold it on his finger for a few moments before throwing it on the floor.

When I first saw the greeter, I noticed it. The similarity with Aiden. The chromosomal enhancement. And I smiled. He was happy. He liked doing his job. After he finished handing Aiden the sticker, Aiden looked up at him. And he looked at Aiden. They both smiled at each other. And stared at each other for about 45 seconds. And they shook hands.

The Man in Red

2010-12-09T16:47:00.000-06:00

Aiden has a love/hate relationship with Santa. Every year, it's anyone's guess as to how he'll react to seeing Santa. Sometimes, he likes Santa. Other times, well....

This year, we attended a fundraiser/silent auction for Aiden's school. They don't do the door-to-door catalog sales. Instead they do Breakfast with Santa. The school partners with the local Masons group in town and hold a pancake & sausage breakfast and the local businesses donate items for gift baskets. This is the 4th year of doing this, since according to the school, they make more money than with the catalog sales.

Oh yeah, Santa was there...

After the breakfast, we had to go to Walmart since Twilight Saga: Eclipse came out on DVD. (No, I'm not a Twihard nor am I either Team Edward or Team Jacob. But I love the series both in book and DVD.) And Santa was there also...

As you may have noticed, there are no posts about the Christmas tree. I haven't put it up yet. I'm not sure if I want to. Not too much Holiday Spirit going on here.

He Did What?

2010-11-30T19:52:00.000-06:00

Last Sunday, Aiden decided was a good day to get sick. Yeah, right before Thanksgiving. He was supposed to go to school Monday and Tuesday, but the vomiting and fever he produced said otherwise. And he was coughing a lot. Like a whole lot. So he stayed out of school and missed the class dinner, which I sent sweet potatoes (yams - mashed up and mixed with brown sugar, cinnamon and butter then smothered in a bag of mini marshmallows- in other parts of the country) along with our Breakfast with Santa money.

Thursday night, I made the trek to Walmart for the Black Friday toy sale. Aiden's big gift is parked in the garage. And I do mean parked. It still has to be unpacked and the "some assembly required" is still to be determined. I've almost convinced myself to take it to a local Jeep dealership and have them assemble it since they know more about Jeeps and wiring than I do. **That should tell you what Aiden is getting this year.** Shopping wasn't bad this year, I made it out of the store and home by 12:30am. Several customers and an associate made sure that Aiden was getting one when we were discussing our kids and I mentioned that Aiden saw the ad and signed "Mommy" then pointed at the Jeep and signed "please". Yep, the child was getting one. This is the first thing he asked for specifically.

Well, the child is still coughing. Yesterday morning while I was in the shower, the radio news was on. And they said that Whooping Cough was making a comeback in Oklahoma with 66 confirmed cases. Now, normally I would not have a second thought because the child gets his vaccines when scheduled, but I'm a heart mom. So I called Dr. Pediatrician's office and scheduled an appointment.

Today was the appointment. Aiden doesn't have whooping cough, but he has a pretty good cold. Now just to get all the gook and gunk out of his nose.

When Naps Attack

2010-11-24T15:41:00.001-06:00

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And In Aiden's World....

2010-11-19T09:36:00.000-06:00

Aiden had that bout of ear snot last week. Monday, we went to the ENT. He didn't even bother waiting to get into the exam room before the anxiety attack happened. Nope, within the few seconds it took me to sign him in, he went into a full fledged attack and puked. Nice. So, the receptionist ushered us back to the exam room where I finished filling out the rest of the paperwork. As far as Dr. ENT could tell, the tube was still in the canal. Which is good from a Mommy stand point. Continue with the Oflaxacin drops and if I were really brave, dilute peroxide with distilled water and squirt some in Aiden's ear. **That actually went better than teeth brushing by the way**

Next week, we had a trip planned to OKC for a pacer check up. However, that got rescheduled until 2 days before Christmas. Huh? First off, it's two days before Christmas. Secondly, Mommy has been having not warm, fuzzy feelings about this trip. I have no intention on being held hostage in OKC for Christmas. It just isn't happening.

The other day, the weather was nice, so we had the sliding door opened. Which apparently is open invitation for the dog and child to reverse rolls. Hans invited himself in and Aiden took the opportunity to escape outside for some fall leaf demolishing.

Ear Snot, Round 2

2010-11-12T11:24:00.000-06:00

Last night Aiden had drainage coming from his right ear. Fortunately for me, he was sleeping while I put his antibiotic drops in his ear. This morning, he still had drainage, so he stayed home from school. I also called Dr. ENT, Aiden has an appointment Monday morning.

I swear that the child never had ear infections before his hearing aids.

Oh yay!

The Return of the Elusive Nap

2010-11-10T14:23:00.000-06:00

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Congratulations... It's A.... Triplets?

2010-11-07T21:01:00.000-06:00

Yesterday morning, Millie was being very vocal - which she never is that vocal - and it caught my attention. So, I look in the cage to see what Willie was doing to the poor girl.

Well, upon initial inspection, my first thought was that a mouse had gotten into the cage and had attached itself to Millie's leg. Ummmm, WRONG!!!! Willie and Millie apparently decided to mate 111 days ago without telling anyone....

The Frightening Fours

2010-11-04T18:47:00.000-05:00

There is something worse than the Terrible Twos... The Frightening Fours. And Aiden is there in full force. Daily, the child does something he shouldn't do and knows he shouldn't do it. These are the things that make me look at the child and say "They switched you at birth, didn't they?"

The Ion air system is Aiden's latest victim. For whatever reason, Aiden has decided that he doesn't like it standing upright. Nope it should be laying down, not ionizing the air. And this process is repeated not once, not twice, not even 3 times. More like 10 times a day. And then the child looks at me and signs "NO! STOP!" And then he babbles "Bad Aiden".

The hearing aids have become the bane of his teacher's career. He takes them out and throws them. She tells Aiden to go retrieve them. Which he does, only to throw them again and look at her and tell her "NO." He has been spending time in "time out" for this. A lot lately. We're also on our pair of "back up" molds as the child has removed the tubes from his newest set. Yeah buddy!

My glasses. I need them to see. Really I do. Without them I am 2 times legally blind. Seriously, I can not see 2 feet in front of me without corrective lenses. However, Aiden has taken to forcibly removing them for his pleasure. And then he signs "NO". I have 2 other pair of glasses that are in need of going to the optometrist for repair due to the child.

Naps. Naps are apparently a thing of my imagination, though I do vaguely remember the child taking them not that long ago.

The child has also decided that he is old enough to pick his own clothes out for the day. For the most part, I let him have this decision, after all it is his body. However, no clothing is still not an option. We're working on this.

The ~~recliner~~ car seat. A few weeks ago, I took out the Britax Boulevard. The child decided that he didn't want that one. So, I replaced it with the Britax Traveller Plus. It's designed for children with special needs and he can get in and out of it by himself, which we are working on. And it's not a "baby seat" in Aiden's mind. It sits closer to the seat in the truck.

The child has also decided that if you happen to be watching the television or just want peace and quiet (yeah, I know, that isn't going to happen with a 4 year old) and he wants to watch something else, he'll just turn the channel or turn the television and cable box on. Yes, he has learned how to do this within this week. And if you happen to touch the remote while his shows are on, you get yelled at and your hand slapped.

I have also learned that 4 years old is when the child decides that his room does not need cleaned and that it is, in fact, meant to be declared a federal disaster zone. I don't think FEMA could touch that one in under 4 hours.

The garage is no longer off limits according to the child. That is where his bike is located and when he wants to go for a ride, he's going. And no, the child doesn't care if you want to go or not.

Ahhh, the sweet smell of independence.

Creepy Crawler Cooties

2010-11-03T19:20:00.000-05:00

I hate bugs of any kind. Disease, bacteria, germs. Bugs = Cooties.

So imagine my horror, when an hour and a half after dropping Aiden off at school today, the phone rings.

It's Aiden's teacher....

One of the kids in Aiden's class has head lice.

Shivers.

This sends all sorts of red flags up to me. So I went and picked Aiden up from school. He was dipped, combed, Vaselined, straight ironed and whatever else kind of torture I could put the child through. Just as a precaution. I don't do bugs.

He did have flaky scalp though from not wanting his hair completely rinsed.

The vaseline will take care of that.

Get It Down - Day 27

2010-10-27T16:55:00.001-05:00

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Aiden's class took a field trip today to the Carmichael Pumpkin Patch. This was the first time Aiden has ever gotten to ride the school bus. I figured Aiden might like it. He didn't want to sit in the car seat on the bus, but his teachers won that battle. I decided to follow the bus in the truck and meet up with the class for lunch. Before going to the pumpkin patch, we ate lunch at one of the local pizza restaurants and Aiden loved it. Then we headed to the pumpkin patch...

Get It Down - Day 26

2010-10-26T09:47:00.000-05:00

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Today was "Prom Day" at school today for Red Ribbon Week. Aiden wore his tux.

Get It Down - Day 25

2010-10-25T09:08:00.000-05:00

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This week is Red Ribbon Week at Aiden's school. And every day has a different theme for dressing up. Today is "Shades" day and the majority of the kids wore their sunglasses. Aiden wears his sunglasses every day, because he'll leave them on therefore leaving the hearing aids in.

However, today is also the 50th day of school and the Pre-K classes dressed up in 50's attire.

Get It Down - Day 20

2010-10-20T21:05:00.000-05:00

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Get It Down - Day 18

2010-10-18T15:14:00.000-05:00

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Yesterday was our local Down syndrome Association's annual Buddy Walk. This was our fourth year attending and participating. Aiden's first two years involved Aiden participating from the comfortable position of sitting in a stoller. Last year, he had the gait trainer. And Aiden thought that everyone was going slower than he could in the gait trainer.

Several weeks ago, Aiden's physical therapist and I discussed removing the gait trainer. And it disappeared out of the truck one Friday morning. Aiden went to school without the gait trainer. He had to walk into the school by holding onto one of my hands - not both. He's done pretty well at "walking like a big boy". He hasn't asked for his gait trainer since it started living in the garage.

I set Aiden's goal for getting out of the gait trainer at Easter. We missed that goal. So, I set a new goal of his 4th birthday. We missed that one also. I had ~~re-set~~ set a goal for Aiden to participate in this year's Buddy Walk by walking the track without the assistance of his wheels.

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Well, he made my goal. He did manage to walk 3/4th of the track. We waited patiently (well, some of us did) for the end of the line since Aiden was going to have to take his time and take a few breaks. Aiden's occupational therapist and physical therapist were there to help Aiden reach the goal. I invited a few family members and friends to help cheer Aiden on. There was lots of cheers and a few tears.

Next year...

No hands.

Get It Down - Day 14

2010-10-14T16:41:00.000-05:00

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This morning when I took Aiden to school, I asked his teacher if she could make a list of words Aiden uses at school - you know, since "school" words are different from "home" words. She agreed and Aiden's school ST also agreed to make a list of words he uses in speech.

When we got home from school today, he had PT and I asked about maybe changing our private ST. Maybe Aiden is getting bored? I was given the number for the head of speech therapy through the private group we go through. And I called her. I explained that we had nothing against Aiden's ST, but he just wasn't working for her. And she agreed not to submit the evaluation done yesterday since Aiden's level of cooperation was zilch. And an evaluation that shows "zero progress" means less services. On Monday, we're going to set up an appointment for Aiden to be re-evaluated and discuss changing STs.

Get It Down - Day 13

2010-10-13T16:13:00.000-05:00

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Aiden has his yearly speech evaluation today. I'm trying not to pay attention. I really am. It hurts to know that Aiden is choosing to be non verbal. He knows his signs and his words, he just doesn't use them. He doesn't want to. Especially in front of Miss Jessie, his speech therapist. Now get Aiden in front of anyone else and the child knows every word you ask him to repeat.

Aiden learns a new word daily, either verbally or sign. He is eager and happy to learn them. He just doesn't want to use them. Unless it's on his terms.

Get It Down - Day 12

2010-10-12T15:27:00.000-05:00

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Aiden fingerpainted today. And I don't mean with washable paint. His bedroom carpet, toys, pillows, clothes, sheets, pillows and himself were completely covered in poop. I'll spare you the pictures, I didn't take any.

Get It Down - Day 9

2010-10-09T16:44:00.000-05:00

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Aiden has the ability to laugh at the most inappropriate times. He really does. For example, I run smack into one of his chairs with my toes. That gets the child every time. When I yell at the dog for chewing on toys is another time the child likes to laugh. Or the times the top of my head meets the corner of a cabinet door.

Or pictures...