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.