Today was one of those rare moments when Aiden slept past 7 am and was happy to let me sleep in until 9 this morning. Granted he only had about a 45 minute nap yesterday and was up at 2:30am, 3:30am and 5:something this morning. However when we got up, he was so not a happy camper.
Until he spotted my cell phone on the sofa.
He immediately scooted over to the sofa, stood up and grabbed my cell phone. Normally, I don't think much of it. When he plays with my cell, he ends up in the texting screen - or if he does manage to call someone, the recording comes on that the call can not be completed as dialed. Aiden only punches in 4 - 5 numbers.
The cell phone was still in Aiden's hand when it started ringing. He hasn't figured out how to answer it yet. I answered the call as it was Chris.
When I got off the phone with Chris, I went through my received/dialed calls as I had received an email about what areas codes NOT to call. Recently I have been getting calls from a 786 area code. I answered that call once, it was completely in Spanish, so I just don't answer them anymore.
Well, today there was a call placed to a 212 area code. And it was at the time Aiden was playing with my cell. I did a reverse number look-up and much to my amazement, Aiden had made a 32 second call to someone in NEW YORK.
I do believe it is time to keep all phones out of Aiden's reach.
Saturday, February 28, 2009
Friday, February 27, 2009
Hurry Up Spring!!!
Okay, our warm weather is OVER!! This morning, we had to dress in sweats as opposed to wearing shorts. I'm so not liking this. Yesterday was a shorts day, tonight/tomorrow brings a 30% chance of snow. Unh huh, yeah that white stuff. Which is so not going to do any good for the daffodils that have bloomed.
My tulips, however, are a different story. Only part of them have began to show through the ground. I'm not sure if the rest of the bulbs are dead or they are just late bloomers.
Aiden and I made our weekly trip to Wal-Mart today. He is officially a big boy and gets to sit at the table to eat now. A high chair is too bulky for the monsterous table we have, so we went with a booster chair. And it's portable, so when we go elsewhere to eat, Aiden's chair can go with him.
Speaking of Wal-Mart, why is it that every time we go there, people ask how old Aiden is? When I tell them, there is usually a look of shock. Today was the case. As I was loading Aiden and our stuff up in the Jeep, the woman who happened to park next to us was getting into her vehicle. She stopped to say "hi" to Aiden and asked me how old he was.
Me: He's two and a half.
Her: Are you sure? Are you serious?! He's 2 and a half! He's so tiny!
Me:Ummm, pretty sure as I was there the night he was delivered. He's a heart kid.
Granted, most kids Aiden's age (and those younger) are a lot bigger than Aiden is. He's not really short, so to speak. He wears a 24 month top (almost a 3T) and 18 month pants. He just doesn't have the "fat" other kids his age does. He doesn't look like he is any younger (to me) than other kids his age. And I can't blame it on the Down syndrome - some of these kiddos are complete chunks! Like this little boy, Jacob.
I've mentioned Jacob before in an adoption post. The Van Nice's are trying to raise enough funds to adopt Jacob. This time, the family is giving away an iPod Touch. I sooooooo want one of these, so I entered the drawing for a minimal donation. I already have an iPod Nano, but Ineed want a Touch. Aiden's ST has an iPhone and it is so easy for Aiden to work that. He loves to play the games on it. Because it is a touch screen, it makes it easy for Aiden to maneuver the objects around.
My tulips, however, are a different story. Only part of them have began to show through the ground. I'm not sure if the rest of the bulbs are dead or they are just late bloomers.
Aiden and I made our weekly trip to Wal-Mart today. He is officially a big boy and gets to sit at the table to eat now. A high chair is too bulky for the monsterous table we have, so we went with a booster chair. And it's portable, so when we go elsewhere to eat, Aiden's chair can go with him.
Speaking of Wal-Mart, why is it that every time we go there, people ask how old Aiden is? When I tell them, there is usually a look of shock. Today was the case. As I was loading Aiden and our stuff up in the Jeep, the woman who happened to park next to us was getting into her vehicle. She stopped to say "hi" to Aiden and asked me how old he was.
Me: He's two and a half.
Her: Are you sure? Are you serious?! He's 2 and a half! He's so tiny!
Me:
Granted, most kids Aiden's age (and those younger) are a lot bigger than Aiden is. He's not really short, so to speak. He wears a 24 month top (almost a 3T) and 18 month pants. He just doesn't have the "fat" other kids his age does. He doesn't look like he is any younger (to me) than other kids his age. And I can't blame it on the Down syndrome - some of these kiddos are complete chunks! Like this little boy, Jacob.
I've mentioned Jacob before in an adoption post. The Van Nice's are trying to raise enough funds to adopt Jacob. This time, the family is giving away an iPod Touch. I sooooooo want one of these, so I entered the drawing for a minimal donation. I already have an iPod Nano, but I
Thursday, February 26, 2009
A Love/Hate Relationship
Aiden loves his toys. There are times, however, he gets mad at them. You know the times - when he can't manipulate them to do everything he wants them to do or thinks they should do.
Yesterday was such the case. He was playing with some of his sorting blocks. For whatever unknown reason, he decided to take those same blocks and play with them in his big fat mat tunnel. He got himself and those blocks into the tunnel. And this is where the issue began.
The big fat mat tunnel decided to let Aiden know, in no uncertain terms, that he is too tall to actually sit up in the tunnel. (It's just a few inches too short for Aiden to maneuver his little body into the sitting position.) Aiden was not happy about this revelation.
He screamed at the tunnel and kicked it. How dare a toy tell him what he can and can't do!!??
Aiden also thinks that all balls thrown should bounce back to him. He has not realized that all balls are not rubber and therefore do not bounce back.
According to Aiden his toys are meant for the inside of his domain. Not the outside. It was a really pretty day yesterday and warm enough for Aiden to wear shorts. So, as we were waiting on Karrie, EI PT, to show up (however, Mommy forgot that Karrie had Continuing Education yesterday and wasn't going to show up), I took Aiden outside with his sit-to-push-to-walk car. The results were in typical Aiden fashion.
Aiden was not going to have any part of it. He thought it was just down right awful that his toy be outside on concrete and not inside on the carpet. I tried to put him on the grass, but he didn't like that idea either. Yet, he's fascinated with open doors and wants to look outside. He just doesn't want the outside world to touch him. Hopefully, he will outgrow this as Mommy is planning to get a swing set for him. He won't be able to enjoy the swing set if he doesn't allow nature to touch him.
Yesterday was such the case. He was playing with some of his sorting blocks. For whatever unknown reason, he decided to take those same blocks and play with them in his big fat mat tunnel. He got himself and those blocks into the tunnel. And this is where the issue began.
The big fat mat tunnel decided to let Aiden know, in no uncertain terms, that he is too tall to actually sit up in the tunnel. (It's just a few inches too short for Aiden to maneuver his little body into the sitting position.) Aiden was not happy about this revelation.
He screamed at the tunnel and kicked it. How dare a toy tell him what he can and can't do!!??
Aiden also thinks that all balls thrown should bounce back to him. He has not realized that all balls are not rubber and therefore do not bounce back.
According to Aiden his toys are meant for the inside of his domain. Not the outside. It was a really pretty day yesterday and warm enough for Aiden to wear shorts. So, as we were waiting on Karrie, EI PT, to show up (however, Mommy forgot that Karrie had Continuing Education yesterday and wasn't going to show up), I took Aiden outside with his sit-to-push-to-walk car. The results were in typical Aiden fashion.
Aiden was not going to have any part of it. He thought it was just down right awful that his toy be outside on concrete and not inside on the carpet. I tried to put him on the grass, but he didn't like that idea either. Yet, he's fascinated with open doors and wants to look outside. He just doesn't want the outside world to touch him. Hopefully, he will outgrow this as Mommy is planning to get a swing set for him. He won't be able to enjoy the swing set if he doesn't allow nature to touch him.
Wednesday, February 25, 2009
He's Still Sick
When I woke up yesterday, Aiden was at the foot of the big bed, sleeping next to Chris's feet. Had Chris decided to move, Aiden would have went flying off the bed. I got up and woke Aiden up. Aiden's ST came over and they played for a while. After therapy, I had to go to Wal-Mart and the post office. When I returned, Aiden was sleeping. This is how Aiden spent the majority of his day yesterday. 
I'm beginning to think that the additional caloric intake from the corn oil is making him sick. Everytime he has a bottle mixed with the corn oil, he throws up. This can't be good. So I will have to put a call into Dr. Pediatrician and Dr. Food for something different.
This morning I haven't mixed any corn oil with his Pediasure and he has been his normal happy self. His colouring is still a little off, but he is more active today (so far). He let me snap off a few pictures before he got bored of being in front of the camera without getting to play with the camera itself.
But since I'm not sure what it is exactly that is making Aiden sick, I'm keeping him home for the rest of this week.
I'm beginning to think that the additional caloric intake from the corn oil is making him sick. Everytime he has a bottle mixed with the corn oil, he throws up. This can't be good. So I will have to put a call into Dr. Pediatrician and Dr. Food for something different.This morning I haven't mixed any corn oil with his Pediasure and he has been his normal happy self. His colouring is still a little off, but he is more active today (so far). He let me snap off a few pictures before he got bored of being in front of the camera without getting to play with the camera itself.
But since I'm not sure what it is exactly that is making Aiden sick, I'm keeping him home for the rest of this week.
Monday, February 23, 2009
A Really Long Weekend
Aiden hasn't been feeling too well. Yesterday he didn't want to eat. Today, he still hasn't wanted to eat and his colouring is a little off. He looks pale. I'm probably going to end up calling Dr. Pediatric Cardiologist in the morning.
Aiden stayed home from school today because of it. But he still had therapy; with his impending surgery I want to keep him strong in hopes of not losing any abilty afterwards. His therapist got to see all the new stuff Aiden has been working on while we were waiting for re-approval from insurance.
Speaking of achievements, Aiden is so not going to be happy with us. Our new furniture was delivered today. And Aiden is so not going to be able to climb up on the sofa or recliner with the ease of the old furniture. Everything sits taller than Aiden stands.
While we were setting up everything, Aiden's godfather (my best friend), Jason, was here. And he happened to be looking at Chris's fish tank. He asked what the small minnow-like fish was. We don't have any small minnow-like fish. However, we've been catching baby fish for the past 2 hours. It seems as if the yellow labs have decided to breed. And we are now the proud "grandparents" of 7 baby labs. Yay! Not.... So we have set up a nursery tank until we can "adopt" out the babies.
Also today, Chris went to the podiatrist. I sure wasn't thinking it was anything serious until Chris called and asked what days Aiden was going to be "adding more frequent flier miles" to his already long list. Chris is also scheduled for surgery in March. Yay me! Not.... Of course the surgeries will be located at two DIFFERENT hospitals. Goodness Gracious Gravies that my nursing/doctoring skills be used at the same hosptial for both! That just wouldn't be legal, now would it? Chris is having his big toes on each foot cut open and Aiden is having his heart cut open. Chris is abigger baby worse patient than Aiden is. Somebody shoot me now! I swear after all this is over with, I'm going to commit myself - somewhere tropical.
Aiden stayed home from school today because of it. But he still had therapy; with his impending surgery I want to keep him strong in hopes of not losing any abilty afterwards. His therapist got to see all the new stuff Aiden has been working on while we were waiting for re-approval from insurance.
Speaking of achievements, Aiden is so not going to be happy with us. Our new furniture was delivered today. And Aiden is so not going to be able to climb up on the sofa or recliner with the ease of the old furniture. Everything sits taller than Aiden stands.
Also today, Chris went to the podiatrist. I sure wasn't thinking it was anything serious until Chris called and asked what days Aiden was going to be "adding more frequent flier miles" to his already long list. Chris is also scheduled for surgery in March. Yay me! Not.... Of course the surgeries will be located at two DIFFERENT hospitals. Goodness Gracious Gravies that my nursing/doctoring skills be used at the same hosptial for both! That just wouldn't be legal, now would it? Chris is having his big toes on each foot cut open and Aiden is having his heart cut open. Chris is a
Saturday, February 21, 2009
Seriously Way Too Early...........
A certain little boy, who shall remain nameless, decided that 5:20 AM was an appropriate time to wake up on a non-school day.
So far he has managed not only 1, but 2, impromptu wrestling matches pinning both me and Chris to the bed. Throw something into the corner, don't know what haven't looked. Locate the remote control and change the channels. Do the Mickey Mouse Hot Dog Dance twice.
And since he's been up for 2 hours already, he is sitting down eating his Fruit Loops and having his morning milkshake.
But how can I be disappointed in this face?
So far he has managed not only 1, but 2, impromptu wrestling matches pinning both me and Chris to the bed. Throw something into the corner, don't know what haven't looked. Locate the remote control and change the channels. Do the Mickey Mouse Hot Dog Dance twice.
And since he's been up for 2 hours already, he is sitting down eating his Fruit Loops and having his morning milkshake.
But how can I be disappointed in this face?
Thursday, February 19, 2009
Happy 50th Anniversary
On March 21st, 2009, World Down Syndrome Day will mark the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down Syndrome.
Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown.
Professor Lejeune and Dr Langdon Down are regarded as the preeminent contributors to our present understanding of Down Syndrome, not only because of their research into Down Syndrome, but also because each of them contributed much of their own time and money to advocating on behalf of persons with Down Syndrome and their families.
Down Syndrome organisations around the world this year will pay tribute to the pioneering work of Professor Lejeune and celebrate the tremendous advances in the care and social welfare of people with Down Syndrome over the past fifty years.
"Professor Lejeune provided inspiration to parents and professionals who met him, and drew strength and hope from his optimism and his simple and profound dedication to humanity. The Lejeune Institute inParis continues to sponsor research in this area” said Mrs. Penny Robertson, President of Down Syndrome International. “But while there is much to be proud of in western countries in the services provided for people and families with Down syndrome, there is still an enormous amount of work to be done in many countries".
Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown.
Professor Lejeune and Dr Langdon Down are regarded as the preeminent contributors to our present understanding of Down Syndrome, not only because of their research into Down Syndrome, but also because each of them contributed much of their own time and money to advocating on behalf of persons with Down Syndrome and their families.
Down Syndrome organisations around the world this year will pay tribute to the pioneering work of Professor Lejeune and celebrate the tremendous advances in the care and social welfare of people with Down Syndrome over the past fifty years.
"Professor Lejeune provided inspiration to parents and professionals who met him, and drew strength and hope from his optimism and his simple and profound dedication to humanity. The Lejeune Institute inParis continues to sponsor research in this area” said Mrs. Penny Robertson, President of Down Syndrome International. “But while there is much to be proud of in western countries in the services provided for people and families with Down syndrome, there is still an enormous amount of work to be done in many countries".
Wednesday, February 18, 2009
AHA Jump Rope for Heart
The American Heart Association and Subway are sponsoring the 30th Annual Jump Rope for Heart in honour of National Heart Month.
This year, a friend's daughters are jumping and asked if they could jump in honour of Aiden. But Kamryn and Abbie need your help. Their goal is to raise $200 for heart research.
Please click Kamryn's Page or Abbie's Page to donate to this great cause!
A Call from Dr. Pediatrician Just Came In
Aiden's appointment with Dr. Food is in late March, Aiden's cath lab is in early March. Chances are that Aiden's surgery is going to interfere with Dr. Food appointment. So, instead of having to wait until late March and possibly not making the appointment with Dr. Food, Dr. Pediatrician called Dr. Food and had a talk about Aiden's lack of fat.
So, in an attempt to fatten Aiden up for surgery we are going to jump Aiden's caloric intake up. Aiden will now get a tablespoon of corn oil in every 8 oz bottle of Pediasure 4X a day.
Hopefully, Aiden doesn't get too lubricated.
So, in an attempt to fatten Aiden up for surgery we are going to jump Aiden's caloric intake up. Aiden will now get a tablespoon of corn oil in every 8 oz bottle of Pediasure 4X a day.
Hopefully, Aiden doesn't get too lubricated.
Tuesday, February 17, 2009
Are You Sure It's NOT Monday?
I woke Aiden up before 7 this morning and he wasn't too pleased with me. As soon as I put socks on his feet, he was taking them off. He DID NOT want to get dressed. He tried to hit me. Strike #1 against Momma.
And he had to miss the Little Einsteins. Strike #2 against Momma.
I loaded him into the Jeep shortly after 7 this morning. Why? Because my online calendar said that this is the Orange Class week to take snacks to school. And, ummm, I didn't have snacks.
So, off to Wal-Mart before making the trip to school. As soon as we were in the parking lot, Aiden stopped his cussing of Momma. He was happy again. We walked in and one our regular cashiers saw us. She hollered half way across the store that we were there early. True, a 7am trip to Wal-Mart is not part of our schedule EVER!
So we had to stop to talk as she asked about the up coming surgical date Aiden has. She also asked if Aiden still had his "zipper" from the first surgery. I showed her Aiden's "battle ground" (as we call it; yes, it was a battle - more like a war actually). And we talked about the "cardiac team". Most people have a cardiologist, Aiden has several.
We then went over to the bakery department. I wanted to get donuts, but apparently no donuts are made before 8am at Wal-Mart. Instead we went with chocolate chip cookies. As I put the cookies in the cart, Aiden proceeded to give me thego to hell "look." So, I also ended up buying a package of mini frosted sugar cookies in which I am sure Aiden will be stained green by the time I pick him up from school. Why green? Because for some unknown reason, it is impossible to buy white frosted mini sugar cookies BEFORE Easter.
I then go to checkout, but none of the Pepsi coolers are located at an open checkout. Why is that? So, Aiden is talking to the above mentioned cashier as I run over to the next register and get my morning drive to Tulsa caffeine fix. And as soon as Aiden noticed the bottle, he was grabbing for it. Aiden got his fix before I did. And again, more questions regarding Aiden and why OU Children's Hospital is like our preferred hospital and a brief run down on the birth of Aiden.
I get Aiden loaded back into the Jeep without much of a fight. As I am turning onto the highway, a security officer car from one of the local universities switches lanes. Nice... We did avoid a wreck however. Not so for other people who were driving this morning. Big wreck on the BA at the on ramp of Highway 169. I'm still not sure how that one happened as the vehicles were located on different sides of the entrance ramp.
Got Aiden to school and unloaded his Pediasure, cookies, backpack and Aiden. When we got to the class, the door is open and orange streamers are hanging from the doorway. Today is Dr. Pediatrician's grandson's birthday party. Good thing Aiden wanted cookies today.
And of course everyone had to ask how I was holding up. Stop asking people! I'm going to be a complete wreck from now until we get through his follow up appointment with Dr. Pediatric Cardi-thoracic surgeon. Plain and simple. Trust me, I really really don't want to think about it, much less talk about it.
I did tell Miss Kate that Aiden will miss the entire month following surgery for recovery. Aiden probably won't even want to go to school (if he's even out of the hospital) during that time. Yes, I know I'm not being quite as optimistic as I should be, but ummm, the last surgery didn't quite go as well as everyone said it would either. We spent the entire recovery time IN the hospital, half of it in P ICU. If Aiden has to miss the summer session, the school will probably want to put another kid in his place, but he will still have placement for the fall.
Speaking of school in the fall. I think I have made my decision on where Aiden will go next year. I simply am not ready to send Aiden to the 3 - 6 year program our local school offers. So, what I am planning is to keep Aiden in the Little Light House Monday - Thursday and then sending him to the 3 - 6 program on Fridays. This way he can slowly transition into public school. Really, it's more for my sanity than Aiden's.
And he had to miss the Little Einsteins. Strike #2 against Momma.
I loaded him into the Jeep shortly after 7 this morning. Why? Because my online calendar said that this is the Orange Class week to take snacks to school. And, ummm, I didn't have snacks.
So, off to Wal-Mart before making the trip to school. As soon as we were in the parking lot, Aiden stopped his cussing of Momma. He was happy again. We walked in and one our regular cashiers saw us. She hollered half way across the store that we were there early. True, a 7am trip to Wal-Mart is not part of our schedule EVER!
So we had to stop to talk as she asked about the up coming surgical date Aiden has. She also asked if Aiden still had his "zipper" from the first surgery. I showed her Aiden's "battle ground" (as we call it; yes, it was a battle - more like a war actually). And we talked about the "cardiac team". Most people have a cardiologist, Aiden has several.
We then went over to the bakery department. I wanted to get donuts, but apparently no donuts are made before 8am at Wal-Mart. Instead we went with chocolate chip cookies. As I put the cookies in the cart, Aiden proceeded to give me the
I then go to checkout, but none of the Pepsi coolers are located at an open checkout. Why is that? So, Aiden is talking to the above mentioned cashier as I run over to the next register and get my morning drive to Tulsa caffeine fix. And as soon as Aiden noticed the bottle, he was grabbing for it. Aiden got his fix before I did. And again, more questions regarding Aiden and why OU Children's Hospital is like our preferred hospital and a brief run down on the birth of Aiden.
I get Aiden loaded back into the Jeep without much of a fight. As I am turning onto the highway, a security officer car from one of the local universities switches lanes. Nice... We did avoid a wreck however. Not so for other people who were driving this morning. Big wreck on the BA at the on ramp of Highway 169. I'm still not sure how that one happened as the vehicles were located on different sides of the entrance ramp.
Got Aiden to school and unloaded his Pediasure, cookies, backpack and Aiden. When we got to the class, the door is open and orange streamers are hanging from the doorway. Today is Dr. Pediatrician's grandson's birthday party. Good thing Aiden wanted cookies today.
And of course everyone had to ask how I was holding up. Stop asking people! I'm going to be a complete wreck from now until we get through his follow up appointment with Dr. Pediatric Cardi-thoracic surgeon. Plain and simple. Trust me, I really really don't want to think about it, much less talk about it.
I did tell Miss Kate that Aiden will miss the entire month following surgery for recovery. Aiden probably won't even want to go to school (if he's even out of the hospital) during that time. Yes, I know I'm not being quite as optimistic as I should be, but ummm, the last surgery didn't quite go as well as everyone said it would either. We spent the entire recovery time IN the hospital, half of it in P ICU. If Aiden has to miss the summer session, the school will probably want to put another kid in his place, but he will still have placement for the fall.
Speaking of school in the fall. I think I have made my decision on where Aiden will go next year. I simply am not ready to send Aiden to the 3 - 6 year program our local school offers. So, what I am planning is to keep Aiden in the Little Light House Monday - Thursday and then sending him to the 3 - 6 program on Fridays. This way he can slowly transition into public school. Really, it's more for my sanity than Aiden's.
Monday, February 16, 2009
Global End the "R" Word Day
Hi Everybody, I am excited to tell all of you that the first Global End the R Word Day will be held on March 31, 2009!
Sunday, February 15, 2009
Happy Heart Day Aiden
A few weeks ago, we were watching the Gray's Anatomy episodes with the little boy who was struggling for his life. He needed multiple surgeries and transplants.
As we watched the last episode, I lost it. Completely lost it.
I know the fear of knowing my child isn't supposed to make it. I know the pain of telling my child that it is okay to stop fighting and then taking it back for purely selfish reasons. I know the calmness of laying my head on my child's hospital bed, holding his hand and falling asleep.
It hurts. It really hurts. Still to this day. It has been 2 years since Aiden's OHS. (For those stories, click here and here or here)
I will never forget the sound of my child struggling to take a breath because he is in heart failure. I cringe when I hear the alarms from pulse ox machines, ventilators, medication pumps and vital signs monitors. I will always hate the whirring, sucking sound ECMO makes. The clean smell of hospitals makes me nauseous.
I will always detest the fact that when I pick up Aiden's Pro-Aire inhaler that the pharmacist feels the need to remind me that it will counteract the Sotalol. Trust me, I know that. I know that too well. I know that so much, that Aiden goes on the pulse ox machine to monitor his heart rate - EVERY 10 MINUTES!
I hate the Holter monitor. It is a reminder that Aiden's heart doesn't do what it is supposed to do without the aide of medications.
I hate that Aiden takes 3 medications to make his heart do what it is supposed to do and WILL ALWAYS HAVE TO BE ON MEDICATIONS FOR AS LONG AS HE LIVES!
I hate the fact that every single time Aiden is admitted into the hospital I have an anxiety attack. Hell, even walking into Dr. Cardiologist's office is enough to send my blood pressure through the roof and cause an anxiety attack.
I hate the fact that I know the fastest routes to 2 different hospitals in 2 different cities. I even pre-pay turnpike fees in order to avoid having to stop at the little booth.
But inspite of all the things I hate, because of open heart surgery, Aiden is still here. Where he belongs.
I can't say that the pain has gone away, because it hasn't. I don't know if it ever will or even if it will subside. I don't know that the fear will ever go away either. I don't know how long it will take before I can vocalize about Aiden's heart surgery without breaking down and crying.
Yeah, it's like that.
As we watched the last episode, I lost it. Completely lost it.
I know the fear of knowing my child isn't supposed to make it. I know the pain of telling my child that it is okay to stop fighting and then taking it back for purely selfish reasons. I know the calmness of laying my head on my child's hospital bed, holding his hand and falling asleep.
It hurts. It really hurts. Still to this day. It has been 2 years since Aiden's OHS. (For those stories, click here and here or here)
I will never forget the sound of my child struggling to take a breath because he is in heart failure. I cringe when I hear the alarms from pulse ox machines, ventilators, medication pumps and vital signs monitors. I will always hate the whirring, sucking sound ECMO makes. The clean smell of hospitals makes me nauseous.
I will always detest the fact that when I pick up Aiden's Pro-Aire inhaler that the pharmacist feels the need to remind me that it will counteract the Sotalol. Trust me, I know that. I know that too well. I know that so much, that Aiden goes on the pulse ox machine to monitor his heart rate - EVERY 10 MINUTES!
I hate the Holter monitor. It is a reminder that Aiden's heart doesn't do what it is supposed to do without the aide of medications.
I hate that Aiden takes 3 medications to make his heart do what it is supposed to do and WILL ALWAYS HAVE TO BE ON MEDICATIONS FOR AS LONG AS HE LIVES!
I hate the fact that every single time Aiden is admitted into the hospital I have an anxiety attack. Hell, even walking into Dr. Cardiologist's office is enough to send my blood pressure through the roof and cause an anxiety attack.
I hate the fact that I know the fastest routes to 2 different hospitals in 2 different cities. I even pre-pay turnpike fees in order to avoid having to stop at the little booth.
But inspite of all the things I hate, because of open heart surgery, Aiden is still here. Where he belongs.
I can't say that the pain has gone away, because it hasn't. I don't know if it ever will or even if it will subside. I don't know that the fear will ever go away either. I don't know how long it will take before I can vocalize about Aiden's heart surgery without breaking down and crying.
Yeah, it's like that.
Saturday, February 14, 2009
See What Happens When You Play with Vicks?
Not one to be "out-snotted" by Rhett, Aiden decided to let me take this picture today.
He doesn't act like it bothers him one bit. He wont even let me at him with the "sub sucker."
He doesn't act like it bothers him one bit. He wont even let me at him with the "sub sucker."
Happy Valentine's Day
I didn't have a post for today, I really didn't. I was going to do Happy Heart Day pictures, but Aiden's attempt at pretending to be a cat nixed that idea. But, alas, he never fails to give me something to write about.
I swear anytime he wears this outfit, his mouth is covered in something - be it painted purple or chocolate. Fortunately, he didn't really eat a box of chocolates, but he did manage to eat a few freshly baked chocolate chip cookies for this picture. Not only did he get chocolate all over his face, but the carpet also. My poor carpet, it is in dire need of a cleaning after yesterday's Hurricane Aiden.
Friday, February 13, 2009
Putting Those OT Skills to Use
As I sit here reading blogs, I begin to be able to breathe clearly. And then the smell of mentholatum fills the room. Leaving me to ponder, "What is Aiden doing?"
I hear him and I know for a fact that he is close. I look over the edge of my desk and there is Aiden, covered in a slimy substance. Upon further investigation, so is my carpet. There is an open container of Vick's Vapor Rub laying next to Aiden.
As I sit him upright to wipe off said slime, he starts to clap. He is happy with this new found achievement. And thinks I should be also. He could have told me that he was ready to practice opening jars. I would have given him an empty baby food jar. He really didn't need to slime everything in sight. Really, he didn't.I am not ready to begin the sliming process.
It's not like he needed the Vick's. His nose has been runny all day. He's not congested.
Ahh, the joys of a toddler.
YAY AIDEN!! NOT!
I hear him and I know for a fact that he is close. I look over the edge of my desk and there is Aiden, covered in a slimy substance. Upon further investigation, so is my carpet. There is an open container of Vick's Vapor Rub laying next to Aiden.
As I sit him upright to wipe off said slime, he starts to clap. He is happy with this new found achievement. And thinks I should be also. He could have told me that he was ready to practice opening jars. I would have given him an empty baby food jar. He really didn't need to slime everything in sight. Really, he didn't.
It's not like he needed the Vick's. His nose has been runny all day. He's not congested.
Ahh, the joys of a toddler.
YAY AIDEN!! NOT!
Pre-Cath, Cath Lab and Sedated Echo are Scheduled
Just got off the phone with Dr. Pediatric Cardiologist's nurse. Aiden will go in on March 9th to visit with Dr. Secondary Cardiologist (who does the cath labs), we then go over to the hospital for Pre-admit labs and all the wonderful fun stuff that makes my head want to explode.
On March 10th, Aiden will undergo a Cath lab and sedated echo as Dr. Pediatric Cardio-thoracic surgeon wants this done.
On March 10th, Aiden will undergo a Cath lab and sedated echo as Dr. Pediatric Cardio-thoracic surgeon wants this done.
Thursday, February 12, 2009
Wednesday, February 11, 2009
A Surgical Conference
Yep, that's how good our visit with Dr. Pediatric Cardiologist went today. She is going to hold a conference with her colleagues tomorrow and I'll be getting a call on Friday.
It seems that Aiden's mitral valve repair surgery can no longer be put off. It has to be done. His little heart is working so hard that he is burning all of his calories and he's just not gaining the weight he should will all the fat he eats.
But she still wants us to keep the apppointment with Dr. Food.
WOOOOO-FREAKING-HOOOOO!
Oh, and have you ever wondered what the cardiology chart of a "heart only a mother could love" looks like?
Yep, that's Aiden's chart. Seriously. That is 31 months (had those pre-natal appointments in there also) of echos, EKGs, cath labs, surgical notes, appointment notes. All that good stuff.
It seems that Aiden's mitral valve repair surgery can no longer be put off. It has to be done. His little heart is working so hard that he is burning all of his calories and he's just not gaining the weight he should will all the fat he eats.
But she still wants us to keep the apppointment with Dr. Food.
WOOOOO-FREAKING-HOOOOO!
Oh, and have you ever wondered what the cardiology chart of a "heart only a mother could love" looks like?
Yep, that's Aiden's chart. Seriously. That is 31 months (had those pre-natal appointments in there also) of echos, EKGs, cath labs, surgical notes, appointment notes. All that good stuff.
As If I'm Not Going to Cry Enough This Week....
Remember last year, when Aiden's EI team handed me the Beyond Play catalog and told me to make a wish list and the toys came in right before Aiden's birthday? Well, when I picked up those toys, Aiden's case worker gave me a new catalog and told me to order more stuff. So, Karrie (Aiden's PT) and I sat down and went through the new catalog. We picked out a bunch of stuff that is going to help Aiden once he gets out of SoonerStart.
Knowing that early childhood development took the biggest hit in funding, I really didn't expect much. I mean, it's been over 3 months and no one had heard anything. Since then, Aiden's case worker had been changed and the entire Developmental Disabilites Services had moved to a whole new building. Even Aiden's EI service coordinator asked if we had heard anything since she hadn't.
Aiden and I were heading to Wal-Mart yesterday when my cell rang. I didn't hear it ring, but heard the notification that I had a voice mail. I checked the voice mail and it was a social worker.
Aiden's toys were in and ready for me to pick up. Keep in mind, that when I hand over the wish list, I have no clue as to what EI Service Coordinator is going to ask for or what DDSD/DCP is willing to buy. The email said that I would need something bigger than a car to load all the toys into. My heart jumped!
I called Susan (the EI service coordinator) and let her know that Aiden's stuff had come in. Since DDSD had moved to the same office building that Sooner Start is in, Susan wanted me to call her when I got there and she would meet us to check to make sure what we wanted was there.
On the way there, I started crying. I mean this is a pretty emotional week for me as it is. After all, 2 years ago we weren't quite sure Aiden was going to be here. Susan met us in the parking garage and she played with Aiden while I went into the office where the DDSD/DCP things were being handed out. I handed her the itemized letter that Susan had submitted.
The woman started handing me HUGE boxes of stuff. Enough huge boxes that I should have had Chris meet me there with the other Jeep. My Jeep was packed FULL! I opened one of the boxes and found the shipping list. And I cried even more. I told Susan that this was a good week to be getting all this stuff for Aiden. And I gave her a huge hug.
When we got home and I unloaded the Jeep, Chris's first reaction was "Did he get furniture?" Yeah, for the most part.
The first thing I unloaded and brought into the house was this:
It has stairs for Aiden to learn to climb on, a ramp, and a tunnel. Aiden LOVES this. He played with this while I unloaded and unpacked the rest of his new toys.
This is awesome!! It is made of soft foam so that Aiden can't hurt himself on it. Basically it is one of those fat mats used in gymnastics made into a toy.
We're probably going to have to convert the garage into a play room for all of Aiden's toys.
In the next big box was books and smaller toys. Aiden got these shoes to learn how to tie, buckle, button, zip and snap. Which are really really neat since he is trying to dress himself in the mornings and is fascinated with shoe strings. My only concern is him learning the buckle, because it is the same buckle on his recliner car seat harness.
He also got this ball thing. But I'm not sure how well he is going to like this as he's already managed to bonk himself in the head with the hammer. Thus resulting in a tantrum and a much needed nap.
The books he got are great. The first two are Fisher Price Little People. They are flip up books. One is school and the other is farm things. Aiden loves his Little People toys. I love the fact that they are inclusive to children with special needs. Aiden's Little People school bus has a child in a wheel chair.
Chris's favourite toy is the Marble Maze. He just thinks that these things are the coolest thing. They are really great for learning fine motor skills. Aiden is fascinated with the "pens". We looked for the tables that have sand in them, but that search came up negative. I think you have to be a doctor to actually get those things.
Aiden also got this nifty star-shaped crayon. It is perfect for little hands. It is meant for bathtime, but it also works on regular paper. And he can't eat it. Hopefully, Aiden is too young to grasp the concept that crayons also work on the walls. Hence, my thoughts on turning the garage into a playroom.
Since we're starting on Baby PECS, we went ahead and ordered a real PECS system. Right now, it's too old for Aiden, but he'll be able to use it one day. Besides, it's like $200, so why wait? I'm thinking start him off with the "Everyday Objects" since it contains cards of pictures that we use now. Like shoes, socks, food, drinks, bed..... And it gives Aiden another form of communication. This, I am convinced, is a good thing. Yes?
Aiden got his very first "bike"! Actually, it's a tricycle, but hey..... amuse me. I know he isn't ready to pedal just yet, but this bike is designed for special needs moms. It has a push handle! For Aiden's safety, it has a seat belt. Aiden doesn't like to do anything without a seat belt, even his Radio Flyer wagon has a seat belt. And it has a little basket in back for the "necessities" that any little boy would need. Hopefully, I won't find any frogs in there EVER!
So far, Aiden doesn't seem opposed to the bike and as soon as he saw it, he got a huge grin on his face. He let me put him on the bike, without a tantrum. I think he knows that it is going to be new found freedom one of these days.
Knowing that early childhood development took the biggest hit in funding, I really didn't expect much. I mean, it's been over 3 months and no one had heard anything. Since then, Aiden's case worker had been changed and the entire Developmental Disabilites Services had moved to a whole new building. Even Aiden's EI service coordinator asked if we had heard anything since she hadn't.
Aiden and I were heading to Wal-Mart yesterday when my cell rang. I didn't hear it ring, but heard the notification that I had a voice mail. I checked the voice mail and it was a social worker.
Aiden's toys were in and ready for me to pick up. Keep in mind, that when I hand over the wish list, I have no clue as to what EI Service Coordinator is going to ask for or what DDSD/DCP is willing to buy. The email said that I would need something bigger than a car to load all the toys into. My heart jumped!
I called Susan (the EI service coordinator) and let her know that Aiden's stuff had come in. Since DDSD had moved to the same office building that Sooner Start is in, Susan wanted me to call her when I got there and she would meet us to check to make sure what we wanted was there.
On the way there, I started crying. I mean this is a pretty emotional week for me as it is. After all, 2 years ago we weren't quite sure Aiden was going to be here. Susan met us in the parking garage and she played with Aiden while I went into the office where the DDSD/DCP things were being handed out. I handed her the itemized letter that Susan had submitted.
The woman started handing me HUGE boxes of stuff. Enough huge boxes that I should have had Chris meet me there with the other Jeep. My Jeep was packed FULL! I opened one of the boxes and found the shipping list. And I cried even more. I told Susan that this was a good week to be getting all this stuff for Aiden. And I gave her a huge hug.
When we got home and I unloaded the Jeep, Chris's first reaction was "Did he get furniture?" Yeah, for the most part.
The first thing I unloaded and brought into the house was this:
It has stairs for Aiden to learn to climb on, a ramp, and a tunnel. Aiden LOVES this. He played with this while I unloaded and unpacked the rest of his new toys.
This is awesome!! It is made of soft foam so that Aiden can't hurt himself on it. Basically it is one of those fat mats used in gymnastics made into a toy.
We're probably going to have to convert the garage into a play room for all of Aiden's toys.
In the next big box was books and smaller toys. Aiden got these shoes to learn how to tie, buckle, button, zip and snap. Which are really really neat since he is trying to dress himself in the mornings and is fascinated with shoe strings. My only concern is him learning the buckle, because it is the same buckle on his 
He also got this ball thing. But I'm not sure how well he is going to like this as he's already managed to bonk himself in the head with the hammer. Thus resulting in a tantrum and a much needed nap.
My favorite book he got is "I Can, Can You?" The reason I love this book so much is that ALL the children in the book have Down syndrome. Every single page shows a picture of a child with Down syndrome doing every thing a "typical" child does.
Chris's favourite toy is the Marble Maze. He just thinks that these things are the coolest thing. They are really great for learning fine motor skills. Aiden is fascinated with the "pens". We looked for the tables that have sand in them, but that search came up negative. I think you have to be a doctor to actually get those things.
Aiden also got this nifty star-shaped crayon. It is perfect for little hands. It is meant for bathtime, but it also works on regular paper. And he can't eat it. Hopefully, Aiden is too young to grasp the concept that crayons also work on the walls. Hence, my thoughts on turning the garage into a playroom.
Since we're starting on Baby PECS, we went ahead and ordered a real PECS system. Right now, it's too old for Aiden, but he'll be able to use it one day. Besides, it's like $200, so why wait? I'm thinking start him off with the "Everyday Objects" since it contains cards of pictures that we use now. Like shoes, socks, food, drinks, bed..... And it gives Aiden another form of communication. This, I am convinced, is a good thing. Yes?
And last but not least, the last box we opened was the real biggie!! It required more adult assembly then me sticking two pieces of velcro together (like the foam thingy). I had to have Chris's involvement. Translation - tools were required. And this came with tools that I didn't recognize. Since tools were involved, Aiden had to help also. This picture gives away a HUGE clue -- see it in the background?
Aiden got his very first "bike"! Actually, it's a tricycle, but hey..... amuse me. I know he isn't ready to pedal just yet, but this bike is designed for special needs moms. It has a push handle! For Aiden's safety, it has a seat belt. Aiden doesn't like to do anything without a seat belt, even his Radio Flyer wagon has a seat belt. And it has a little basket in back for the "necessities" that any little boy would need. Hopefully, I won't find any frogs in there EVER!
So far, Aiden doesn't seem opposed to the bike and as soon as he saw it, he got a huge grin on his face. He let me put him on the bike, without a tantrum. I think he knows that it is going to be new found freedom one of these days.
Tuesday, February 10, 2009
A Day of Love
How cool is this?!
Local area McDonalds restaurants are celebrating A Day of Love. All proceeds from the sale of $.49 hamburgers and $.59 cheeseburgers sold between 10:30a.m. and 8pm on Tuesday, February 10th will be donated directly to the Ronald McDonald House Charities of Tulsa.
Aiden and I did our part for the local RMH. Even though I never stayed at the house in Tulsa, we did stay at the RMH in Oklahoma City, both when Aiden spent a month in NICU and during his open heart surgery. What the staff and volunteers of the Ronald McDonald House does is truely amazing.
On our last night at the RMH house in the city, I shopped for and prepared a homemade lasagna dinner for 18 families. That was a lot of lasagna!
Local area McDonalds restaurants are celebrating A Day of Love. All proceeds from the sale of $.49 hamburgers and $.59 cheeseburgers sold between 10:30a.m. and 8pm on Tuesday, February 10th will be donated directly to the Ronald McDonald House Charities of Tulsa.
Aiden and I did our part for the local RMH. Even though I never stayed at the house in Tulsa, we did stay at the RMH in Oklahoma City, both when Aiden spent a month in NICU and during his open heart surgery. What the staff and volunteers of the Ronald McDonald House does is truely amazing.
On our last night at the RMH house in the city, I shopped for and prepared a homemade lasagna dinner for 18 families. That was a lot of lasagna!
A Busted Lip, A Bloody Nose, and Tulips
Remember that childhood song about monkeys jumping on the bed? Well, a certain little boy decided to jump off the bed this morning. And not the little boy bed either, the big bed. He seems to think that he is a cat and will land on his feet. The problem is, his feet isn't the first thing to hit the floor.
Nope, it is his face. And this is the results.... (click on the pictures for the full effect LOL!)
He cried for less than a minute, so I think it was the shock of finding out he isn't a cat. He's happily playing now. Aiden stayed home from school today because he just didn't get any sleep last night even with a full belly, a bath and a big poop. He was so congested last night that he couldn't breathe well enough to sleep.
And the tulips finally decided to make an appearance. They didn't drown in the torrential flooding of last year. I still need to buy some more though. Hopefully I can find some colour variants I don't have to add to the mix.
Nope, it is his face. And this is the results.... (click on the pictures for the full effect LOL!)
He cried for less than a minute, so I think it was the shock of finding out he isn't a cat. He's happily playing now. Aiden stayed home from school today because he just didn't get any sleep last night even with a full belly, a bath and a big poop. He was so congested last night that he couldn't breathe well enough to sleep.
And the tulips finally decided to make an appearance. They didn't drown in the torrential flooding of last year. I still need to buy some more though. Hopefully I can find some colour variants I don't have to add to the mix.
Monday, February 9, 2009
Congenital Heart Defects Awareness Week
As everyone by now knows, Aiden was born with a few significant heart defects. Aiden was born with both an A/V Canal Defect and Tetralogy of Fallot, complicated with hypo-plasia of the right ventricle.
The 2nd anniversary of Aiden's open heart surgery (or Happy Heart Day) is coming up on February 15 - the day after Valentine's Day.
This week - February 7th - 14th is National Congenital Heart Defect Week
Most all people know that February is National Heart Month. We are all familiar with wear Red Dress Day, we are all familiar of the importance of understanding adult and youth acquired heart disease. It is a well known fact that heart disease is the #1 killer among women. Because everyone relates February with Valentine's Day and love, chocolate candy hearts, and the color red it only makes sense February would be chosen as National Heart Month. But if you were to go ask the average person on the street if they ever heard of Congenital Heart Defects, I am sure your response would be quite different from those about acquired heart disease.
By no means do we want to down play the importance of acquired heart disease and the need for prevention and intervention. But we do need to make aware the need for more research and awareness to those who are BORN with Congenital Heart Defects. It was not lifestyle or age that brought on these defects, and there was no way to stop it from happening.
To the parents who have a child born with a heart defect it is mind blowing how little awareness there is for the #1 Most Common Birth Defect. There has, fortunately, been a greater amount of funding going into CHD research, however, there is still a much greater need for more.
Please help join in the Awareness this week and pass this on.
Spread the word (feel free to copy this note and tag your friends!) and wear your Red & Blue on Feb. 14th!
The 2nd anniversary of Aiden's open heart surgery (or Happy Heart Day) is coming up on February 15 - the day after Valentine's Day.
This week - February 7th - 14th is National Congenital Heart Defect Week
Most all people know that February is National Heart Month. We are all familiar with wear Red Dress Day, we are all familiar of the importance of understanding adult and youth acquired heart disease. It is a well known fact that heart disease is the #1 killer among women. Because everyone relates February with Valentine's Day and love, chocolate candy hearts, and the color red it only makes sense February would be chosen as National Heart Month. But if you were to go ask the average person on the street if they ever heard of Congenital Heart Defects, I am sure your response would be quite different from those about acquired heart disease.
By no means do we want to down play the importance of acquired heart disease and the need for prevention and intervention. But we do need to make aware the need for more research and awareness to those who are BORN with Congenital Heart Defects. It was not lifestyle or age that brought on these defects, and there was no way to stop it from happening.
To the parents who have a child born with a heart defect it is mind blowing how little awareness there is for the #1 Most Common Birth Defect. There has, fortunately, been a greater amount of funding going into CHD research, however, there is still a much greater need for more.
Please help join in the Awareness this week and pass this on.
- Congenital Heart Defect (CHD) is a defect of the heart present at birth.
- CHD's are the #1 most common birth defect, affecting 1 in every 100 babies born.
- CHD's are the #1 most common cause of infant death related to birth defects within the first year of life.
- There are at least 35 different known Congential Heart Defects.
- 1 in 10 born with a CHD will have a fatal defect.
- There is no known cause for CHD's, however, genetics and environmental factors can play a role in the defects. Scientist have been able to discover over 100 mutations that are directly linked to the heart.
- There is no known cure or prevention for CHD's. Most born with heart defects will require some form of palliative surgical intervention.
- Through research and medical advancements the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was.
- There are an estimated 1 - 1.2 million living with a CHD in the US.
- Nearly twice as many children die each year from CHD's, than from all forms of childhood cancers combined.
Spread the word (feel free to copy this note and tag your friends!) and wear your Red & Blue on Feb. 14th!
The Art of Getting Aiden to School
My alarm goes off at 6am. I am not one of those people who like waking up to an alarm, nor do I like the sound of one going off. I absolutely refuse to hit the "snooze" button just because I can't stand to hear that sound again.
I then spend 10 minutes checking my emails and waking up enough to get in the shower. While in the shower, I listen to the radio for weather and traffic reports.
When I get out of the shower, Aiden is starting to whine as he is waking up. Aiden is not the happiest of campers waking up. The best time to get Aiden to take his "milkshake" is while he is just on the verge of opening his eyes. He doesn't care that there is medicine mixed in his Pediasure and will drink all of it. While Aiden is having breakfast, I get dressed and turn on the television so that he may watch the Little Einsteins. This must be accomplished before Aiden makes his way into the living room as a full blown meltdown will occur if the television has not produced enough power to light up New York City. This is the problem with huge televisions, they must warm up.
The next feat is to get the child dressed. Since I listen to the radio and my web-based weather man are usually in agreement, the weather appropriate clothes are chosen. (This morning though, I was left to wonder exactly what state everyone was getting their information from. Both the radio and Yahoo! weather said 63* between the hours of 6 and 8:15am. However, my Jeep thermometer was reading 13* LOWER!!!)
Aiden will fight when it comes to getting out of his jammies. Then he will fight you while attempting to get him out of the wet diaper. Once he is out of the wet diaper, he "Ahhhhs", but doesn't want a new diaper on. We then put on the shirt, which he is happy to do. He claps because he knows how to pull the shirt on over his head and stick his arms in the sleeves.
Next comes socks. Aiden allows socks, because the Sure Steps are soon to follow. However, when it comes to pants, this is our biggest fight. The child does not think that he needs to wear pants. And he will kick the crap out of your face if you get that close - enough to make me check that there is no blood dripping down.
Now it's time for the Sure Steps. According to Aiden, this is the best part of getting dressed.He now has weapons on his feet. He loves to click his heels together in the same manner Dorothy does in the Wizard of Oz. And since he is perfectly happy thinking there is "no place like home", he doesn't want his shoes on. Again, another battle insues until he remembers that the Little Einsteins are on.
Then it is time to pack his backpack. I have to make sure that he has a change of clothes and has his Gerber Graduates Mashed Potatoes. Hopefully, he doesn't need anything else for school.
I then grab my purse, cell phone and various other necessary items for the 35 minute drive to Tulsa. (I say 35 minutes, because that is the quickest we will make it. Mondays and Thursdays are the exception as that is when the state of Oklahoma allow those who have absolutely NO RIGHT to drive on the highways the opportunity to kill someone. On those days it takes 50 minutes to get to school because some people have no clue as to how to merge and it takes 10 minutes to get through one stinking traffic light because of it and ALL traffic must come to a complete stop for whatever reason.)
On the way to school, again listening to the radio forincompetent driver traffic reports. God forbid people have to learn how to merge onto I-44 and not slow down make traffic come to a complete stand still for 4 miles. And no, it is not possible to change lanes as ALL 4 lanes of traffic on the Broken Arrow Expressway is stopped for one exit/entrance lane - even the car pool/fast driver lane. The alternative route to school (Highway 169 - Death Highway) is even worse. At the exit to get to school, it is a fine art in itself not to get plowed into by a semi trailer entering the BA Expressway from Sheridan.
Once we get through the traffic lights, Aiden starts to get excited as he knows where school is. I get to our parking spot, unlock the doors, free Aiden from hisrecliner car seat, wipe his nose, grab his back pack, realize his Pediasure for the week is still at home, take him into class. Get the note that Aiden is out of Pediasure, give Miss Kate money for pizza party, tell Aiden good bye, get back in Jeep, drive .5 miles to nearest grocery store, find baby aisle, HUNT for Pediasure which is located on top shelf way above my head, stand in line at the only open register, pay for said Pediasure and head back off to school before snack time when Aiden will want his Pediasure.
I then spend 10 minutes checking my emails and waking up enough to get in the shower. While in the shower, I listen to the radio for weather and traffic reports.
When I get out of the shower, Aiden is starting to whine as he is waking up. Aiden is not the happiest of campers waking up. The best time to get Aiden to take his "milkshake" is while he is just on the verge of opening his eyes. He doesn't care that there is medicine mixed in his Pediasure and will drink all of it. While Aiden is having breakfast, I get dressed and turn on the television so that he may watch the Little Einsteins. This must be accomplished before Aiden makes his way into the living room as a full blown meltdown will occur if the television has not produced enough power to light up New York City. This is the problem with huge televisions, they must warm up.
The next feat is to get the child dressed. Since I listen to the radio and my web-based weather man are usually in agreement, the weather appropriate clothes are chosen. (This morning though, I was left to wonder exactly what state everyone was getting their information from. Both the radio and Yahoo! weather said 63* between the hours of 6 and 8:15am. However, my Jeep thermometer was reading 13* LOWER!!!)
Aiden will fight when it comes to getting out of his jammies. Then he will fight you while attempting to get him out of the wet diaper. Once he is out of the wet diaper, he "Ahhhhs", but doesn't want a new diaper on. We then put on the shirt, which he is happy to do. He claps because he knows how to pull the shirt on over his head and stick his arms in the sleeves.
Next comes socks. Aiden allows socks, because the Sure Steps are soon to follow. However, when it comes to pants, this is our biggest fight. The child does not think that he needs to wear pants. And he will kick the crap out of your face if you get that close - enough to make me check that there is no blood dripping down.
Now it's time for the Sure Steps. According to Aiden, this is the best part of getting dressed.
Then it is time to pack his backpack. I have to make sure that he has a change of clothes and has his Gerber Graduates Mashed Potatoes. Hopefully, he doesn't need anything else for school.
I then grab my purse, cell phone and various other necessary items for the 35 minute drive to Tulsa. (I say 35 minutes, because that is the quickest we will make it. Mondays and Thursdays are the exception as that is when the state of Oklahoma allow those who have absolutely NO RIGHT to drive on the highways the opportunity to kill someone. On those days it takes 50 minutes to get to school because some people have no clue as to how to merge and it takes 10 minutes to get through one stinking traffic light because of it and ALL traffic must come to a complete stop for whatever reason.)
On the way to school, again listening to the radio for
Once we get through the traffic lights, Aiden starts to get excited as he knows where school is. I get to our parking spot, unlock the doors, free Aiden from his
Saturday, February 7, 2009
My Dearest Aiden
Since you insist on becoming more of a toddler, it is time to cover some of the ground rules again.
Not everyone wants to take a shower/bath with your toys. Please leave them out of the tub; it is not necessary to throw balls into the tub while Mommy is taking her shower.
The trash can that is in the bathroom has it's own special location. The shower is not it. Please do not pick it up and then decide to empty it's contents into the tub.
Thank you for helping Mommy shave her legs. But once again it is not necessary to point/show Mommy the spots she hasn't quite yet gotten to.
The shaving cream is for Mommy's legs, not your hair.
Mommy will control the amount and temperature of the water, not you.
While we are out grocery shopping, please keep in mind that I have been picking out produce longer than you. You do not need to re-inspect the tomatoes.
Also, please keep in mind that Mommy has to read the grocery list as she no longer remembers much of anything. Please do not grab the list out of Mommy's hands and then throw it on the floor.
And while we are grocery shopping, please keep in mind that the ENTIRE store does not necessarily want or need to know that you are there. If we have passed the cookie aisle, it is because Mommy got cookies elsewhere.
You do not need to flirt with every single female standing in line behind and in front of us. Yes, you are cute, but you're not old enough to date.
Do not ask to be put on the floor at the grocery store. I don't know where everyone's shoes have been. Yes, we did it once while checking out, but it will not become habit.
When Mommy is unloading the Jeep and bringing groceries in, you do not need to go outside and play. Mommy can not watch you while she has her body sticking half way in the Jeep. There is a step that you will fall face first into the walkway because you have not yet mastered getting up stairs. Concrete is harder than carpet.
When Mommy picks your toys up, it is for a reason. She is getting ready to vacuum. Please leave your toys alone for the time being. You would not like it if the vacuum ate up your toys. Vacuuming is necessary to do at least once a day.
Left over Goldfish crackers do not need to be ground into the carpet. The more you do this, the more Mommy has to vacuum.
Please do not place anything other than the recommended balls into the Busy Ball Popper. It will not work correctly if you stick anything else in it.
Sleep. You are not the only one who likes to do this. It is necessary for other people in the house to get some also. Mommy does appreciate more than 3 hours of uninterrupted sleep.
Please keep in mind these few simple rules. They are in place for a reason.
With Love,
Mommy
Not everyone wants to take a shower/bath with your toys. Please leave them out of the tub; it is not necessary to throw balls into the tub while Mommy is taking her shower.
The trash can that is in the bathroom has it's own special location. The shower is not it. Please do not pick it up and then decide to empty it's contents into the tub.
Thank you for helping Mommy shave her legs. But once again it is not necessary to point/show Mommy the spots she hasn't quite yet gotten to.
The shaving cream is for Mommy's legs, not your hair.
Mommy will control the amount and temperature of the water, not you.
While we are out grocery shopping, please keep in mind that I have been picking out produce longer than you. You do not need to re-inspect the tomatoes.
Also, please keep in mind that Mommy has to read the grocery list as she no longer remembers much of anything. Please do not grab the list out of Mommy's hands and then throw it on the floor.
And while we are grocery shopping, please keep in mind that the ENTIRE store does not necessarily want or need to know that you are there. If we have passed the cookie aisle, it is because Mommy got cookies elsewhere.
You do not need to flirt with every single female standing in line behind and in front of us. Yes, you are cute, but you're not old enough to date.
Do not ask to be put on the floor at the grocery store. I don't know where everyone's shoes have been. Yes, we did it once while checking out, but it will not become habit.
When Mommy is unloading the Jeep and bringing groceries in, you do not need to go outside and play. Mommy can not watch you while she has her body sticking half way in the Jeep. There is a step that you will fall face first into the walkway because you have not yet mastered getting up stairs. Concrete is harder than carpet.
When Mommy picks your toys up, it is for a reason. She is getting ready to vacuum. Please leave your toys alone for the time being. You would not like it if the vacuum ate up your toys. Vacuuming is necessary to do at least once a day.
Left over Goldfish crackers do not need to be ground into the carpet. The more you do this, the more Mommy has to vacuum.
Please do not place anything other than the recommended balls into the Busy Ball Popper. It will not work correctly if you stick anything else in it.
Sleep. You are not the only one who likes to do this. It is necessary for other people in the house to get some also. Mommy does appreciate more than 3 hours of uninterrupted sleep.
Please keep in mind these few simple rules. They are in place for a reason.
With Love,
Mommy
And the Winners Are....
Aiden was so honoured to pick the winners of our Happy Heart Day Give-A-Way.
He shuffled the names ( I did have them in a bowl, but he decided to use skills learned in OT and dump the bowl). Here he is reading the first name.
And the winners are
Debbie from Three Weddings and Christine (jjpsmommy07) from Jonathon's Journey. (If you ladies will email me with your addresses and scent choices from the website, I will get those ordered and in the mail to you!)
He shuffled the names ( I did have them in a bowl, but he decided to use skills learned in OT and dump the bowl). Here he is reading the first name.
And the winners are
Debbie from Three Weddings and Christine (jjpsmommy07) from Jonathon's Journey. (If you ladies will email me with your addresses and scent choices from the website, I will get those ordered and in the mail to you!)
Friday, February 6, 2009
He's Up 6 Out of 9 Oz
And Dr. Pediatrician was happy! She asked what we were doing and I told her basically infusing Aiden with food and lots of it. I told her about Aiden eating pizza and buffalo wings and spaghetti with meatballs. She asked if we were pureeing them, which we're not - he's eating solids.
So, we will not be seeing a Dr. GI anytime soon.
We will however be seeing a Nutritionist in March. Dr. Pediatrician sent the request as soon as we left the office and within 2 hours the scheduler for Dr. Food called. Aiden's first appointment is March 24.
The reason for Dr. Food is that I asked about the possibility of giving Aiden micro-lipids (basically pure fat to help him gain weight) again. Aiden was on micro-lipids when he was born and spent a month in NICU. Dr. Pediatrician thought this a good idea. She went to pull up how much to give him and found that there are 2 other oils (corn and vegetable) that contain more calories than micro-lipids. So, she wants to send Aiden to Dr. Food for an evaluation.
Aiden was denied fats for 16 months, now he's going to be overloaded on them.
Hey, if it avoids another surgery, I'm happy to give it a try...
So, we will not be seeing a Dr. GI anytime soon.
We will however be seeing a Nutritionist in March. Dr. Pediatrician sent the request as soon as we left the office and within 2 hours the scheduler for Dr. Food called. Aiden's first appointment is March 24.
The reason for Dr. Food is that I asked about the possibility of giving Aiden micro-lipids (basically pure fat to help him gain weight) again. Aiden was on micro-lipids when he was born and spent a month in NICU. Dr. Pediatrician thought this a good idea. She went to pull up how much to give him and found that there are 2 other oils (corn and vegetable) that contain more calories than micro-lipids. So, she wants to send Aiden to Dr. Food for an evaluation.
Aiden was denied fats for 16 months, now he's going to be overloaded on them.
Hey, if it avoids another surgery, I'm happy to give it a try...
It's Give-a-Way Time!!!
Aiden's 2nd Happy Heart Day Anniversary is coming up, so we're giving away 2 prizes.
The rules are simple - leave a comment and you're entered into the drawing to win 1 of 2 Gold Canyon candles from my website.
And you will have the opportunity to gain several entries:
1) Leave a comment with the scent you want.
2) Post it on your blog, with a link - and leave a separate comment.
3) Tweet about it - and leave a comment.
4) Link to the give-a-way on Facebook - and leave a comment with the link to your page.
5) Follow Me
That is up to 5 entries to win a candle! Winners will be drawn Saturday, February 7th.
The rules are simple - leave a comment and you're entered into the drawing to win 1 of 2 Gold Canyon candles from my website.
And you will have the opportunity to gain several entries:
1) Leave a comment with the scent you want.
2) Post it on your blog, with a link - and leave a separate comment.
3) Tweet about it - and leave a comment.
4) Link to the give-a-way on Facebook - and leave a comment with the link to your page.
5) Follow Me
That is up to 5 entries to win a candle! Winners will be drawn Saturday, February 7th.
Thursday, February 5, 2009
PJ Party at School
Aiden was a little freaked out when we left the house this morning. And for a good reason. The ONLY time he leaves the house in his jammies are when we have an early procedure scheduled at the hospital. However today wasn't a hospital visit. Today was the Orange Class PJ Party at The Little Light House.
Wednesday, February 4, 2009
Early Intervention Team Meeting
Aiden's EI service coordinator, physical therapist, and speech therapist came out today. With Aiden becoming more vocal and signing more, his speech therapist wants to really hit him hard for the few remaining months he has left of SoonerStart.
So, Aiden will have some sort of therapy 4 days a week:
Monday - ST, OT, PT X 2
Tuesday - OT, PT, ST X 2
Wednesday - ST, OT, PT X 2
Thursday - OT, PT, ST X 2
We also have a tour of our local school's 3 - 6 year old program. We will get to meet the teacher, tour the school, and see the class room. It also gives me a chance to see how Aiden interacts with the teacher.
I also had an impromptu discussion with Lydia and Jennifer - two of the moms at school. Both of their kids have g-tubes. Both girls were taking a bottle before g-tube insertion. Now, neither one are. They both advised against it for Aiden, seeing as how he does eat. I also talked to Jessica, the ST at school. She also advised against it. She would rather wait two months and add micro-lipids to Aiden's Pediasure. Aiden's EI ST also agrees. We will bring this up with Dr. Pediatrician on Friday when we go in for Aiden's weight check. Yes, it's been two weeks. And he feels like he has gained weight.
Oh, and important lesson learned today. NEVER EVER allow your child to wear white during ST and the child is eating coloured Goldfish.
So, Aiden will have some sort of therapy 4 days a week:
Tuesday - OT, PT, ST X 2
Wednesday - ST, OT, PT X 2
Thursday - OT, PT, ST X 2
We also have a tour of our local school's 3 - 6 year old program. We will get to meet the teacher, tour the school, and see the class room. It also gives me a chance to see how Aiden interacts with the teacher.
I also had an impromptu discussion with Lydia and Jennifer - two of the moms at school. Both of their kids have g-tubes. Both girls were taking a bottle before g-tube insertion. Now, neither one are. They both advised against it for Aiden, seeing as how he does eat. I also talked to Jessica, the ST at school. She also advised against it. She would rather wait two months and add micro-lipids to Aiden's Pediasure. Aiden's EI ST also agrees. We will bring this up with Dr. Pediatrician on Friday when we go in for Aiden's weight check. Yes, it's been two weeks. And he feels like he has gained weight.
Oh, and important lesson learned today. NEVER EVER allow your child to wear white during ST and the child is eating coloured Goldfish.
Tuesday, February 3, 2009
A Day at School
Aiden woke up at 5:00 this morning; I'm not too sure why, but he wasn't about to be talked into going back to sleep for 2 hours. He didn't want his morning milkshake either.
So, I got him out of bed and while I showered, he watched Disney and played with his toys. For the most part, he was good while getting dressed - with pants being the only exception.
As I loaded him into the Jeep, I noticed he was a little "rattly" in the chest, so I gave him an Albuteral treatment. He fell asleep on the way to school. And he wasn't too happy about being woke up. Since Aiden refused to take his morning medications, the bottle went with him. When we got to school I asked Nurse Marianne to keep an eye on his heart rate, since Albuteral has the tendency to reverse the effects of his Sotalol and make his heart do those pesky things.
At school, they played with Play-Doh. Apparently it looked appetizing to Aiden, as he tried to eat it. The Play-Doh got stuck in his palette and Nurse Marianne had to retrieve it. Fortunately, she didn't lose a finger.
While Aiden was at school, I went for a desperate nail fill. Now I have worn tips for a few years now. However, this time, my nail girl cut off my tips and just put the solar powder over my real nails. OMG! I actually have nails. I went with red tips with silver lining and hearts for Valentine's Day.
I also went to Babies 'R Us for Aiden's Happy Heart Day/Valentine's Day clothing. Pictures will come next week. I really should stay out of BRU, but I know that they always have clearance racks.
I arrived early at school as usual, and met one of the moms from Cafe Mom. Her daughter, Kaitlin, went to the Little Lighthouse and graduated from there 3 years ago. We have "known" each other for over a year, but today was the first time we officially met. How cool is that?!
Aiden was more than happy to see me when the bell rang. He was tired. I told him that is what he gets for waking up at 5am. He did fall asleep on the way home, so he got a little nap, not much of one.
When we got home, Chris had computer parts all over the floor and as soon as Aiden noticed, he was ready to play on the "net".
So, I got him out of bed and while I showered, he watched Disney and played with his toys. For the most part, he was good while getting dressed - with pants being the only exception.
As I loaded him into the Jeep, I noticed he was a little "rattly" in the chest, so I gave him an Albuteral treatment. He fell asleep on the way to school. And he wasn't too happy about being woke up. Since Aiden refused to take his morning medications, the bottle went with him. When we got to school I asked Nurse Marianne to keep an eye on his heart rate, since Albuteral has the tendency to reverse the effects of his Sotalol and make his heart do those pesky things.
At school, they played with Play-Doh. Apparently it looked appetizing to Aiden, as he tried to eat it. The Play-Doh got stuck in his palette and Nurse Marianne had to retrieve it. Fortunately, she didn't lose a finger.
While Aiden was at school, I went for a desperate nail fill. Now I have worn tips for a few years now. However, this time, my nail girl cut off my tips and just put the solar powder over my real nails. OMG! I actually have nails. I went with red tips with silver lining and hearts for Valentine's Day.
I also went to Babies 'R Us for Aiden's Happy Heart Day/Valentine's Day clothing. Pictures will come next week. I really should stay out of BRU, but I know that they always have clearance racks.
I arrived early at school as usual, and met one of the moms from Cafe Mom. Her daughter, Kaitlin, went to the Little Lighthouse and graduated from there 3 years ago. We have "known" each other for over a year, but today was the first time we officially met. How cool is that?!
Aiden was more than happy to see me when the bell rang. He was tired. I told him that is what he gets for waking up at 5am. He did fall asleep on the way home, so he got a little nap, not much of one.
When we got home, Chris had computer parts all over the floor and as soon as Aiden noticed, he was ready to play on the "net".
Monday, February 2, 2009
No School or Therapy
Aiden spent the majority of the day yesterday coughing from sinus drainage. Then last night during pizza and wings (Super Bowl food), he decided to run a fever. He ate a lot though - 2 wings, a few bites of pizza, the pizza crust and 2 bottles.
He didn't want to go to sleep until after 10 last night. This morning he is really reallybitchy grumpy and clingy.
Since we changed his insurance carriers, he won't have private PT or ST until we get all new referrals and authorization.
Oh, and if you haven't already entered into our give-a-way, I encourage you to do so.
Our hotel is booked for the OKC Down syndrome conference Reaching Across the Plains, so now I have to get the check in the mail for our registration. With the ice storm last week, they moved the registration dead line.
He didn't want to go to sleep until after 10 last night. This morning he is really really
Since we changed his insurance carriers, he won't have private PT or ST until we get all new referrals and authorization.
Oh, and if you haven't already entered into our give-a-way, I encourage you to do so.
Our hotel is booked for the OKC Down syndrome conference Reaching Across the Plains, so now I have to get the check in the mail for our registration. With the ice storm last week, they moved the registration dead line.
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