An Eventful Two Days

Aiden apparently decided that yesterday was a good day to send Mommy into cardiac arrest due to stress.

First I had to meet with Dr. Genes to go over the results of the genetics testing. Yes, Aiden has an elevated number on one of the Celiac panel tests. Dr. Genes feels that Aiden has a gluten sensitivity. He wants Aiden on the gluten free diet. Pediasure is already gluten free.

While Mommy was talking to Dr. Genes, one of my teeth shattered. Yes, shattered. All I have now where that tooth was it a nub. So I call Chris to get me an emergency visit to the dentist; hopefully he does sedation. I hate the dentist. Anxiety attack will occur.

While I was waiting for Chris to call back with the emergency dental visit time, Miss Kate called.

Aiden had stopped breathing, went blue and became unresponsive. But he came out of it. Well, I went to pick him up at school and called Dr. Pediatric Cardiologist (who happened to be in the cath lab.) The nurse called back after my emergency dental appointment (which by the way, I have a sedated root canal scheduled for first thing Monday morning.) She had to get Dr. Cardiologist out of the cath lab to make a decision...

Take Aiden to the ER = we're admitting him.

The Children's Hospital has it's very own ER even though it is located in the same building directly across from the "adult" ER and they share a waiting room. At the adult ER, I would walk in carrying Aiden, say "heart patient who stopped breathing" and we would be seen immediately.

At the Children's ER, we waited an hour to be triaged then another 2 hours before we actually got to go back to a private room. Where we waited another 2 hours before the doctor even came in.

While we were waiting, Dr. Pediatrician called to tell me some important information regarding the poop test that the lab forgot to inform me of. I have to keep track of how much Aiden eats of everything. Oops, will have to restart the poop test. I tell her what Dr. Genes said about the gluten free diet, can't make any changes to Aiden's diet until AFTER we see Dr. Guts in July.

Finally, after 6 hours in the ER, we get a room on the 3rd floor of the Children's Hopsital. I promptly tell the nurse that the pharmacy will need to make Aiden's medications as he has a 2 hour time frame in which to take them. So, they now have 10 minutes to get that taken care of. She first must locate a doctor to order them and they are making rounds. The doctor comes in, um an hour later, to get Aiden's history.

Problem with the doctor is he is an intern and I get to personally explain ECMO and all that good stuff about heart surgery. How did I get so lucky as to get the ONLY doctor who doesn't know what ECMO is?

Aiden's meds arrive about 11pm, which um, Aiden is asleep and so not going to take them. We'll have to skip them. Good thing they put Aiden on telemetry. I'm sure the PICU nurse was also admitted for a heart attack.

At 3:30 this morning, yes AM - still dark outside, an EKG tech decides that he wants to do Aiden's EKG. I inform him to come back at 7am as Aiden is sleeping. EKG tech states that it only takes a minute. Sure, if Aiden is cooperative... He isn't going to be cooperative at 3:30 in the morning AFTER being woken up. The one minute EKG lasted 15 minutes as Aiden was screaming and a nurse was attempting to hold him down.

At 6:30am, Aiden woke up. I had told the nurse previously that he would be requiring cold Pediasure as it is the only way he would drink it. Guess what she didn't do? So Aiden did not want his morning milkshake (with meds mixed in) and therefore didn't drink it.

Then comes the Echo tech. An Aiden echo takes an hour, to which Aiden decided he was done with it after 30 minutes. Then in comes another EKG tech. I inform her and the nursing staff that Aiden was subjected to a 15 minute EKG at 3:30am. Apparently, the first EKG tech didn't believe me and could not get a good reading so he never submitted it to the chart.

Dr. Pediatric Cardiologist's office calls and says that she still wants Aiden to do a Holter monitor. The EKG tech from the office would be delivering it to the room.

The doctoring team comes in to do their rounds. Main doctor asked about Aiden's blue spell. Since Aiden was at school when this happened and I was not, I had to call Aiden's teacher to have her give the details to the doctor. The information shared led to Dr. Hospital ordering Aiden to undergo an EEG.

EEG tech comes in and pastes little electrodes all over Aiden's head and then bandages the head of said Little Boy.

(I apologize for the quality - they were taken with my cell phone)

Dr. Pediatric Cardiologist comes in and says that the echo and EKG were normal (for Aiden) and that there were no changes. We then talked about what Dr. Genes said. Once we have all the testing from Dr. Guts then she will resubmit the results to Dr. Pediatric Cardio-thoracic Surgeon for another heart surgery.

Dr. Hospital came in around 3pm and said that all the tests were normal and that if I was comfortable with going home, we would be discharged.

Aiden got to come home.

And we still don't know what is going on.

72 Hour Poop Test

Aiden had an appointment with Dr. Pediatrician first thing this morning. By "first thing" I mean we must leave our house by 7:15am - totally skipping the Disney morning schedule and fight even worse traffic to be checked in at 7:45 for his 8am appointment. Uh huh, yep.

The appointment was originally supposed to be for weight re-check. However, Dr. Pediatrician called Thursday about the vitamin supplements Dr. Genes wants Aiden on. Then we got to talking about the results of the genetics testing and Aiden's ability to preserve the snot.

Dr. Genes called on Friday with the results....

Aiden's growth hormone level is on the lower end of normal, but it is still in the normal range. Dr. Genes said may want to bring in Dr. Hormones. Dr. Pediatrician said "normal is normal, let's not worry about it now."

Thyroid, CBCs and Chem 14 panels are completely normal.

Celiac panel, 1 level out of 5 is "elevated". Dr. Genes said may want to do biopsy. Dr. Pediatrican and Dr. Guts said "won't be doing biospy because only one of the numbers is slightly elevated."

Pre albumin levels are low. Since we don't actually have an appointment with Dr. Guts until July, Dr. Pediatrician ordered...

72 hour poop test.....

I must "collect and store" all of Aiden's poop for the next 72 hours. The lab gave me a big gallon jug to do this. Are they serious?! First off, Aiden isn't going to fill the jug in 72 hours. Oh, and storage ---- in my refridgerator. Ewwww!

Then I must take a sample from the jug and freeze it. Then another sample and refrigerate that.

And while the collection is being done, Aiden must wear Saran Wrap in his diaper so that the diaper doesn't soak any of it up. Odds are that I am not going to talk Aiden into pooping into the jug directly.

The reason for the poop test is to check the amount of fat that Aiden is not storing in his body.

Aiden, Ducks and Worms, Oh My!

The temperatures here have been in the mid 80s all week. Aiden has been having sinus issues, so he has been staying inside.

Today, I made Chris go buy a new lawn mower, because our yard maintenance people aren't mowing yards anymore. Aiden had a massive meltdown that lasted an hour. When we got home, Aiden took his nap - induced by Tylenol due to the busted lip he gave himself.

When Aiden woke up, I made suggested Chris clean out the duck taxi, so he took the ducks and Aiden outside. On the sidewalk was a monster worm that had taken refuge on the sidewalk since I'm sure the vibration of the earthquake lawn mower scared the jeepers out of it. Chris was like, "Hey, bring that worm over here!" Um, NO!! I don't touch worms, never have, never will. This is a problem with having boys. They are fascinated with gross, slimy, squiggly creatures.

I took well over the allotted amount of pictures for one slide show... but the final 88 made the cut. (If we're friends on Facebook, you know the estimation of amount of pictures I take in a month. Isn't digital great?!)

Not Always Happy

 

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Spring Portrait

 

One of the local photographers came to Aiden's school to take spring portraits of the children. To view the other portraits of Aiden, click here. Then click on the LLH Easter link on the bottom left hand side. The site is password protected and the passcode is LLH. 

Oh No He Didn't.......

Oh yes, he did!

The other day, Chris, Aiden and I were out running errands. Chris got the idea to go to the only store in town that is classified as "the man store" - Atwoods. For those not familiar with Atwoods, it is a farm and ranch store. Anything farm/ranch related can be purchased here. Think Wal-Mart to the farmers. Small livestock can be purchased.

Chris took Aiden to the small farm animal section. They had baby chickens and turkeys. Not cute animals. Aiden leaned all the way over to get his first look at a chicken. At least he knows what his food looks like before Mommy buys it (I was 15 before I saw a chicken in it's entirety - not fried and on the dining table.)

Chris made the comment "Awww, they don't have baby ducks!"

Now, this comment normally wouldn't make most people snap their necks, but it sends up red flags to me.

Fastforward to today.....

Aiden and I get home from school, Chris comes flying out of the door and asked if I wanted to go grocery shopping with him. "Ummm, no. Aiden has therapy in less than 2 minutes" (therapist is pulling into the driveway at this exact time). So, Chris goes grocery shopping by himself.

Approximately an hour and a half later, Chris returns.

I hear chirping.

Sitting in the middle of my living room floor is a box and a little boy.

The little boy is fascinated with the contents of the box.

The conversation went like this......

"What the h-e-double hockey sticks did you do that for?! We don't need ducks! Where do you intend on housing them?!"

Obviously, they can't live outside with Dogg.

"In the dog taxi."

"Did you buy duck food?"

"Yes."

"Did you buy hay?"

"For what?"

"For bedding"

"No, we have timothy hay" [for Willy to eat]

"Did you buy a duck pool?"

"No"

"Where do you intend on the duckettes swimming?"

"The tub"

"The bath tub that you are now going to disinfect several times a day since ducks sh*t in water?"

"I can't wait to see what he [Little Boy] does in the bath tub with them!"

"You ARE NOT putting them in the tub with him!"

"Yes I am"

"No you are not"

"Yes"

"Chris, NO!"

"It will be okay"

"NO! You are not putting them in the tub with Aiden"

"Why not?"

"1) Ducks sh*t in water. 2) I don't want them biting him 3)..."

"Ducks don't bite"

"Yes, they do"

"Put your hand in there"

"No, you are not putting them in the tub with Aiden. I would like to keep him from getting an infection"

"Just long enough for a picture"

"NO!"

Aiden and His Critters

We've had the hound for a year now and Aiden still isn't too sure of him. Chris brought Dogg in the other day to give him a bath and afterwards, let him run around the house. Aiden was very cautious about being around him. Usually when Dogg sneaks his way in, Aiden freezes up and can't move. However, Aiden was a little curious about a wet Dogg being in the house.

Dogg is curious about Willy, the chinchilla. Dogg hasn't tried to get to Willy yet, but I think Willy would take him on in a fight and remove Dogg's nose if needed.

Aiden is fascinated with Willy. He wants to feed Willy everything he can get his hands on - including paper.

T21 Traveling Afgan Project

Photo and video editing at www.OneTrueMedia.com

One blanket. Many states. Many countries. Hundreds of families. One common thread!

That's how it all began.

In February of 2009 the mother of a child with Down syndrome crocheted an afghan and began The T21 Traveling Afghan Project to promote awareness and solidarity in the Down syndrome community.

The afghan travels from one family to another, along with a journal. Each family takes pictures of their family member with Down syndrome to be posted on the Project Blog.

To date, there are participants in forty of the fifty states, Canada, Germany, Australia, Puerto Rico, Saudi Arabia, UK and Switzerland.

For more information, please contact CJ Field by email at chandosjoy@gmail.com.

Please take a moment to view the T21 Traveling Afghan Photo Montage and help us spread the word any way you can! Thank you for your time and consideration!

The Facebook Group has almost three hundred members.

The Running Baby

My Back Hurts

Since Aiden has discovered this walking thing, that is ALL the little boy wants to do. Walk to the bathroom, walk to his bedroom, walk to the dining room, walk to the living room, walk to the kitchen, walk outside, walk down the driveway. Walk, Walk, Walk, Walk. He even tried to run yesterday. I'm not ready for running.

Aiden is also sick. So is Chris. Aiden's is sinus drainage causing him to gag on the mucus setting off the gag reflex. I don't know what Chris's issue is, but his stomach has been upset. Yay me! NOT!!!

We went to meet with Dr. Genes yesterday. He wanted to know why we made it to his office now, when Aiden is nearly 3. I had to tell him about the last cath lab and about cardiologists not being convinced Aiden's lack of weight gain is due to the heart only his mother could love.

He then asked what kind of Down syndrome Aiden has. I told him that we really didn't know. Down syndrome is Down syndrome, either you have it or you don't. Aiden has it, good enough for me. When I was given the diagnosis, I said "Okay" not "What specific type?" According to Dr. Genes, that was the question he would have asked. Well, at the time, I wasn't thinking that far ahead about future weight gain issues.

I'm pretty sure Aiden does not have translocation as no one else in the family has it. Only a few of Aiden's medical team has questioned mosaic. Since Aiden wasn't pre-diagnosed or born in the St. Francis health system, the amniocentesis results aren't in the records. Can I get those for him? Um, sure. Maybe.

Diagnosis: Failure to Thrive.

I hate seeing that on a piece of paper. I do. Seriously, you might as well kick me in face. That medical term needs to be changed to something else. So, more blood tests were ordered; 7 more.

1. Complete CBC
2. Complete Chem 14 panel
3. Pre-albumum screening
4. Insulin like growth factor
5. Complete thyroid panel
6. Complete celiac panel
7. Zinc level

Aiden wasn't too happy with the phlebotomist, even though she stuck him on the first try. Dr. Genes also suggested vitamin supplements, so I have to call Dr. Pediatrician to find out what she wants him on. (Side note, just called and left message for Dr. Pediatrician to call back with vitamin information - I'll forget otherwise.)

Due to Dr. Genes wanting the amnio results, I had to call Dr. Ob/Gyn at home, because she moved offices and I don't have the new number. I was hoping that she retained all the records from the old group, but nope. However, she is going to call that group and have them send the amnio results to Dr. Genes. Dr. Ob/Gyn said that she didn't remember seeing anything unusal regarding the results, so she was thinking Aiden has "garden variety" Down syndrome, or non-disjunction.

Calling Dr. Ob/Gyn prompted the memory that I am due for that exam. While I love my ob/gyn, I hate that exam. I really do. I don't know one woman who particularly likes that exam. My ex husband once said that I must really enjoy going, since I went so often (I had to go every 6 months, due to cancerous cells). I informed him of what exactly happened in that exam. I even offered to make him an appointment with the proctologist as the exam was the same. He apologized and never brought it up again. And now that I am over the age of 35, more things need to be examined. More things need pushed, poked, proded and squeezed. YAY!!! NOT! Why do I feel the need to take a sedative before I go to the ob/gyn office?

Joining the Big Boys

 

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Easter Pictures

We hope you had a Hoppy Easter! Aiden didn't "hunt" for his eggs outside; it was cold and rainy here yesterday. For some unknown reason, the weather NEVER cooperates on Easter.

Since the weather was terrible, we decided to have Easter at our house this year. Our feast looked more like a Thanksgiving Day table, than an Easter table. We had honey glazed ham, green bean casserole, croissants, noodles, two different types of sweet potatoes (Chris has to add additional things to his - coconut, pecans and honey), mashed potatoes and 5 different desserts - pecan pie, pumpkin pie, a caramel pie, ambrosia salad and pistachio fluff.

Chris's mom, step dad and one brother attended. I should have sent the Diet Pepsi home with them as I don't drink unleaded.

Anyhoo, on to the reason why you're reading... the pictures. I combined the school's Easter party pictures with those from Easter at the house...

Aiden absolutely has to help with the dishes. He loves doing the dishes. This will be his chore when he is older. Aiden stuck his fingers in the dish soap and got it on his pants. For some unknown reason, Palmolive Eco dish washing soap contains bleach. Those fingers went directly to Aiden's pants, ruining the pants. So Chris's mom is going to make Aiden some shorts out of them.

Happy Easter

Grab a Graphic from pYzam.com

My Easter Miracle

It took 31 1/2 months, but he did it.

The Peabody Developmental Exam

Aiden had his first IQ test this morning. His OT and OT assistant came out to administer the Peabody test.

The PDMS-2 not only assesses gross and fine motor skills in young children but also provides a convenient remediation program. Designed to evaluate children from birth through age 5, the PDMS-2 is composed of six subtests that assess related motor abilities that develop early in life: Reflexes, Stationary (body control and equilibrium), Locomotion, Object Manipulation, Grasping, and Visual-Motor Integration. Results from these subtests are used to generate the three composite scores: Gross Motor Quotient, Fine Motor Quotient, and Total Motor Quotient. Scores are presented as percentiles, standard scores, and age equivalents. Norms, based on a nationally representative sample of more than 2,000 children, are stratified by age. The test can be individually administered in 45 to 60 minutes. A Guide to Item Administration provides explicit, illustrated instructions for each item. Once you have evaluated the child, you can use the PDMS-2 Motor Activity Program to plan individualized intervention. This spiralbound book contains concrete, practical suggestions for helping the child acquire fine and gross motor skills. It is highly useful in identifying goals, objectives, and activities for inclusion in IEP and IFSP plans. The PDMS-2 can be used to estimate a child's overall motor competence relative to peers, or to evaluate his or her fine versus gross motor abilities. The test is useful in educational therapy because it assesses both qualitative and quantitative aspects of the child's motor performance. The quantitative information generated by the PDMS-2 is helpful in monitoring the child's progress during remediation.

Preliminary scores are 16-18 months. I called Karrie, Aiden's EI therapist, to find out if the scores were consistant with how she would score Aiden. Karrie normally wouldn't tell parents the scores, only because most parents would freak out. Actually, Aiden is doing better than I thought; I have to take into consideration the prematurity and the health issues and the months of hospitalization. That is all going to affect Aiden's gross/fine motor skills.

He's doing pretty good considering how far he has come and with what he's had to endure.

And considering he walked up the driveway and the sidewalk in front of the house today, hey........ it's just a test.

Continuing A Tradition

 

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Those Eyes

Every morning when I take Aiden to school, I get to see a majority of the kids. All of the kids have a special need, whether it is Down syndrome, another trisomy, a monosomy or something else.

I am drawn to those with Down syndrome.

It may be because I am biased to those like Aiden. But I'm not convinced of it.

I see a lot of physical characteristics. The first thing I notice are the eyes. Those beautiful almond shaped eyes. The eyes that smile when the child smiles.

I have heard the old addage that you can see a person's soul through the eyes. They say that you can tell a lot about a person through their eyes. I can tell when Aiden is sleepy or when he is thinking about how to solve a problem. I can see the excitement in them. Aiden's eyes show when he is disappointed or shocked that he got into trouble. His eyes tell everything about what he is thinking. They are also the first clue that he is about to do something he knows he shouldn't.

Aiden's eyes don't hide anything.

Those beautiful almond shaped eyes that mirror a beautiful soul.

I Think He's Faking It

Aiden had a relatively good night last night. He woke up around 3:30am for a bottle and wanted to come back to bed with me. Only, he ended up waking Chris up as he was trying to go back to sleep. Once he heard Chris's voice, he was ready to play. Fortunately, the sleepy side won over once Aiden laid still.

I woke him up at 7:00am to get ready for school. The temperatures outside were below freezing this morning. It is April and a week before Easter isn't it? Spring is officially here, right? So, I dressed Aiden in a sweater and jeans. He looked like a little frat boy, so I spiked his hair. Which looked really cute until I put the stocking cap on his head and the spiking glue plastered half of his spikes to his head.

 

 

He promptly removed the hat as soon as we were in the Jeep as he deemed it not necessary. Once we got to school though, the hat went back on.

A little after 11am, Miss Kate called and said that Aiden had decided to throw up before lunch. He had also cried a few times today. He is teething 2 molars and one of his eye teeth, so that could be the problem. But, since he was sick at school, he got to come home and therapy cancelled. Hopefully, there will be no more episodes since Thursday is the Easter party and portraits at school.

Aiden napped on the way home. Once we got home, he took a bottle and played with Chris.

Does this look like the face of a sick little boy?

In Business for Himself

Joe Steffy is off to Overland Park, Kan., this week to do a PowerPoint presentation on his business, Poppin' Joe's Kettle Korn. He's a 23-year-old small-business man with a goal of $100,000 in sales by 2012. Joe also has autism and Down syndrome and is nonverbal. When he gives his talk, he will push buttons on an augmentative speech device to deliver the words. His audience will be parents who fervently hope their own special-needs children will be able to work, too.

Joe's parents, Ray and Janet, didn't agree with the school district assessment in their home town of Louisburg, Kan., that said Joe would never be able to work or live independently. "I'm one who can easily get ticked off," says Ray. "That ticked me off. We saw more in Joe than that. We set out to prove to the school that he had capabilities." They came across kettle corn while on a trip to Alaska and realized that all that popping, scooping, and serving suited Joe's love of work.

The path to Joe Steffy's success was not an easy one; Ray Steffy worked closely with Dave Hammis, an advocate for self-employment for people with disabilities in Middletown, Ohio, who trains business owners, government employees, and parents on how to make use of state and federal programs. The Steffys wrote up a business plan and helped Joe secure $25,000 in grants from programs like Social Security Administration's Plan to Achieve Self-Support program (PASS).

In 2005, Poppin' Joe's Kettle Korn was born. Sales have grown from $16,000 in 2005 to $50,000 in 2008, both from selling at festivals and from delivering popcorn to local outlets. Joe has five part-time employees, and his parents help out with driving and other tasks. "Pop and everyone that works with him knows whatever Joe wants to do you let him do, because he's the boss," Ray says. "If he wants to pop, he'll shove Dad out of the way and pop."

If the business stays on track, it should be grossing more than $100,000 in three years, and the Steffys are seeking a business partner who can work with Joe to manage the business. Joe is no longer on Social Security disability payments; instead, he pays state sales tax and state and federal income tax. He rents his own house and is helped by caregivers who are paid by a state program.

"It's been hard work, from the standpoint of physical work," says Ray Steffy, who is 67. "But a parent with a child like Joe has a choice. You can either kick in and do this kind of thing, or you can sit and fret emotionally with the amount of energy, worrying about what's going to happen to them."

The payoff for that effort, as far as the Steffys are concerned, has been priceless. They see their son make a local popcorn delivery, accept payment, fold it, and put it in his pocket. When he walks out, his dad says, Joe looks 3 inches taller than when he walked in.

http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness

OT Evaluation

Aiden spent Friday getting an evaluation from home therapy for occupational therapy. Since he is **insert banned word here** out of our EI services, Dr. Pediatrician referred Aiden for continuing services from a private group. He's been receiving PT and ST for several months now, but there wasn't an OT available in our area. Until last week.

So the service coordinator came to the house (which in itself is a major feat since our 911 address isn't available using GPS or any interactive online map - and I forgot to give her the old address - and the quickest way to the house is under construction - a new bridge is being built, blocking off all of downtown) to play with Aiden.

Aiden needs to work on his self feeding skills using utensils. He hasn't figured that his elbow is also supposed to bend. He gets the concept when finger feeding. He needs to work on lacing things. He needs to work on reaching up since he still wants to sit on his tail bone and not his butt. He needs to work on standing up in the middle of the floor without the sofa or recliner helping. He needs to work on getting into a chair that is his size. He needs to learn to get off of the furniture without diving face first onto the floor.

He is going to undergo another test next week before services begin. I don't remember the name of the test. It's been one of those days.

Today, Chris decided that he wanted Chinese for lunch; there isn't a Chinese restaurant in town. We had to go to Broken Arrow. Aiden was excited when he saw the Jello. He loves Jello, it is messy enough for him. Then he wanted the ice cream.

After lunch, we went to Ross to look for an Easter outfit. No such luck. For some reason - I swear - department stores do not think that boys need to look cute. They had a ton of little girl clothes, but very little boy stuff. I did find a Snoopy outfit and a Nike onsie, but the line was atrocious. We left without buying anything as I wasn't waiting for an hour to checkout with a little boy who was getting grouchy sleepy and Chris who also was getting gripy about his toes being in shoes. Aiden also doesn't like the carts at Ross, the pole scares him, so he HAD to be carried the entire time. (He doesn't like the carts at Target either.)

Speaking of Easter....

I NEED some ideas for Aiden's Easter basket................

The Hundred Acre Woods

I promised a long long time ago to post pictures of Aiden's wall mural, The Hundred Acre Woods. Well, I finally got around to re-arranging his bedroom (on the last day of Spring Break) to get the best picture of the largest part of the mural.

 

 

The Bear Walk

Aiden is trying so hard to walk these days. Elliot in Aiden's class came into school yesterday without being in the stoller or being carried. He came in with his walker. I told Aiden to take notes. He did, somewhat....