School: Day 12

Today was another day for Carson to go to school.  I was excited because yesterday I had to make cupcakes for Baylee's class Thanksgiving feast and I made a few extra for the staff. I made them look like mashed potatoes and gravy with a pad of butter (white icing, caramel and yellow Starburst). It makes me feel happy knowing that even though it's just a cupcake it's a way to show them they're appreciated. I know for a fact that there have been multiple occasions they have all bought stuff with their own money to get things that Carson will use in class.

Patty and Carson worked on the stairs for a bit.  She used a tree on a thick poster board this time.  There were Velcro spots where the leaves should be.  Each spot had a number beside it and the leaves at the top of the stairs had corresponding numbers.  He did great with this.  He still needs a lot of help going down the steps but he seems to be getting the hang of going up.  I think it's the momentum of coming down and he's just not strong enough to fight gravity.

In the classroom just the other little boy showed up.  Jen and Amber were back so I was able to just sit at the table in the back of the room and watch.  Amy was there filling out IEP reports for other kids but it was nice to see her. 

Jen put Carson on this bean-shaped "ball".  He straddled it and bounced on it while they went over the days of the week.  Carson was very audible as they counted the days, all the way to 25.  Amber asked him to put the number in the calendar and he completely freaked out.  He was scratching Jen and pulling her hair.  She finally had to pick him up to make him put the number in the slot.  They moved him a few feet away from the other little guy and it seemed to calm him down.  They did the weather (COLD!!) and Carson was happy to put the coat on the panda. 

LaQuita read a story about playing in the leaves.  As she was reading I noticed Carson writing with his finger on the mats on the floor.  Patty and Jen were cracking up at it but I wasn't sure why.

After the story, Jen brought him over to the table to work on fine motor.  They began with cutting straws.  He was very oral-sensory-seeking and wanted to chew on all of the straws.  They made a deal and he had to cut the straw once and then he would be allowed to chew on it again before cutting it again.  They cheer him on and really make it seem as if he is cutting the straw but I'm honestly not sure if he is or not.  They are scissors that look like tongs so you don't have to put fingers into loops and Jen is always hand-over-hand with him so I can't tell how much he is doing himself and how much she is helping him.

Patty came to me and told me that they have decided that Carson is going to write a book about all of us when he is older and about how stupid we all are.  That is what they were laughing about.  He was so frantic about what he was writing on the mat that they decided he is probably already on about chapter 4.  Amy got in on it and was saying that he is going to describe in detail how we make him label the craziest things and here he is now learning how to spell Kilimanjaro.  This is one reason I love these girls.  They know him so well. 

Fine motor also consisted of using BINGO paints and connect the dots papers.  Jen explained that the paint is great because you have to squeeze it to get the paint to come onto the little pad so it will make him work just that much more.

For PT it was all about jumping again.  Over the weekend he actually jumped off of our coffee table into my lap as I was sitting on the couch.  I cried.  I tried to get him to do it again but it was just a fleeting thing that he just wasn't thinking about when he did it and for the rest of the tries he was basically just falling forward onto me.

After PT and OT we went over to LaQuita and he was not interested in anything she had planned for us.  He got so upset with us that he gouged my neck and my chin.  I tried to act like it didn't hurt but it was burning like Hell.  He even went after LaQuita once.  It's embarrassing because here they are just trying to help him and he gets so pissed off that he is now lashing out at them as well.  I don't know how to take it.  I don't know if that means that he is comfortable enough around them now to really show them what he does or doesn't want to do because before no matter who it was he would always take it out on me.  I think I'd rather him take it out on me.  I know that it's not personal.

Once we had everything out of him that we thought we could get for the day, which was basically nothing, we let him decompress on the little couch and watch his iPad.  LaQuita, Amy and I watched and listened as he began to say certain letters that he was watching on a certain app.  He is getting really good at saying I, E, R, U, T etc.  He will draw them in the air with his hand and say either the letter itself or the sound that it makes.  It's not all the time and it sounds very monotone as if he is tone-deaf but it's something.  Amy was amazed since she hasn't seen what he has been doing besides what I text her or post on Facebook. 

We stayed about 15 minutes extra to hang out while everyone ate their cupcakes and just chatted about random things.  Sometimes it's still hard to grasp that he will be leaving them in about 6 months.  We've had so many people come and go in our lives and I always think that I will miss them but then new people follow and fill those voids.  If I do home school him next year it will just be us again.  Part of me is terrified about that and part of me is really excited. 

XX

Mashed potatoes anyone??

School: Day 11

School last Monday was a little crazy.  Both Jen and Amber were at conferences so they were not in class and of course the other two kids both came so we were short handed. 

Carson first did the stairs with Patty.  This time she used a picture of a turkey on a thick poster board.  The outline of where the feathers were supposed to go were numbered and the laminated feathers with the corresponding numbers were at the top of the little stair case.  Carson had to go up and get a feather and then bring it down the stairs and match it with the right place for the feather to go.  He was able to go about 10 times before he started getting really tired and began leaning on Patty for support.  She knew then it was time to give him a break.

LaQuita came down the hallway and I was so excited to show her the video of Carson signing both mom and dad.  I told her that he is now also signing eat and diaper.  She asked him to show her the sign for diaper and he showed her without hesitation.  He's really getting it now.  It makes me so hopeful for him.

In the classroom I got to be hands-on again since it was only Patty, LaQuita and Mrs. O stepped in to help where she could.  I was really happy that Carson seemed to be doing really well with the regular classroom activities.  I put him on a ball and he bounced and bounced while the teachers counted the days of the month (he is getting good at humming the days as they count).  He almost seemed to want to answer the weather question for the day but since the other little boy in the class is the only one who can walk without help they allowed him to be the weather watcher and go to the window.  Cold and sunny.  Dressing the Weather Panda was fun.  Carson picked pants to put on the little guy.  He put them where they were supposed to go, except he put them on upside down so the waist was at his feet and the openings for the feet were up at the waist.  Oh well, it was cute.

After the classroom activities we sat on the mat and listened to LaQuita read "The Bear Says Thanks."  I love this book.  We have it at home and actually had just read it the night before.  Every time the bear said "thanks" she wanted the kids to sign it so that Carson was included.  Signing thanks is easy.  Put your fingertips to your chin, all of your fingers closed, and then take your hand straight down so that your palm is facing up to the ceiling as if you are handing someone something out of your hand.

Carson worked with Patty for a while trying to jump on the trampoline.  He wouldn't do it for her.  I couldn't figure out why until he reached for my hands.  When we are home and jumping I always take his hands in mine and jump with him.  Patty was standing behind him and just trying to get him to jump alone.  He won't do something unless he feels safe and I think seeing me do it at the same time makes him feel that secure feeling he needs.

After jumping for a bit Patty let him have a little free time and play with the cardboard bricks.  He was trying to build a tower as tall as he was.  She was showing him how to make a wide base in the beginning to assure that it would be sturdy enough to hold the weight as it got bigger but he was determined to do it his way.  We both cracked up when he got it so tall and wobbly that it came crashing down on his head.  He just looked at the mess and walked off.

For speech LaQuita was having fun playing Break the Ice with Carson.  It took him a while to figure out how to used the little hammer thing to tap the blocks out of the holder but once he did he was a total cheater and would break out more than one at a time.  It was cute.  She would show him cards with three pictures on them with something in common and she was hoping that he would be able to tell her what it was (all red, toys, hot etc).  He probably did about 50/50 with this.  He would want to tell her the things in the pictures and not what she was aiming for.  I couldn't blame him.  For three years we have only been trying to get him to name things in class not families of items.  

After speech they played a song on the computer that was the alphabet and Carson was actually enunciating the letters.  He wasn't saying them all perfectly but the ones he did know he would almost yell them he was so excited.  I was glad that LaQuita was able to hear what he was doing because sometimes I think they think I'm full of shit when I tell them that he is doing certain things but then doesn't come close when he is there.  I am now trying to get more things that he does on video just so I can show them at school.  I'm hoping that maybe it will help his therapists think of new things for him to try.

XX

New Achievements

Several exciting things have happened over the last few days with Carson.  The first is he has figured out how to feed himself with a fork!  This is huge because we have always fed him ourselves if we are (rarely) out somewhere so he doesn't make a mess of himself or the table, floor etc.  If we don't feed him then he hand-feeds himself and it gets VERY messy.  If there's ketchup in a dish forget it.  He will have it on his clothes, the furniture, the carpet, his iPad, anything.  My sister gave us some utensils that her daughter had been using-they're made for much smaller kiddos with a really fat handle and wide prongs so not much damage can be done with them.  I made meatloaf and mashed potatoes for dinner and for some reason the starchiness of the potatoes is very hard to clean off of his hands and screen to his iPad.  For no other reason than I was planning on using it myself, I put the fork on his plate and walked away from where he was sitting at the table to get my drink off the counter.  When I turned around I caught just the tail-end of him putting the fork in his mouth by himself!  I was stunned.  I asked Mike if he had put the food on the fork for Carson and he said no.  Almost right on cue Carson slowly and carefully scooped up another bite and maneuvered it into his mouth.  Tears of happiness.  It's become so amazing to me how much the little things truly mean.  My 5-year-old little guy just did something for the first time that so many parents don't even think about at that age anymore.  It's just a given that's how it's done.

I don't think Carson even really grasped how substantial it was until we started clapping for him with each bite he took.  I really just wanted him to keep doing it so I clapped every time.  It's how we got him to keep throwing his diapers away too.  We still clap for that to this day.  It makes him happy.  He knows he's doing something good.

Carson has also started signing more words.  He has a Signing Time app on his iPad that shows flash cards of some basic signs but also will show you a brief video of Rachel Coleman doing the signs as well.  Out of the blue he's watching 'mom' (hand sideways in front of your face, fingers splayed out like you're giving a high-five only with your thumb on your chin) and he touches his chin with his pointer finger.  At first I wasn't sure if that's what he was trying to do but he kept repeating the video and every time she said mom he would do it.  If you're a parent, do you remember that feeling the first time your child said mom or dad to you?  That burst of pride in your chest?  That's how I felt.  For the first time he was calling me by name.  He then went to dad (same hand formation just on your forehead not the chin) and did the sign back to Rachel on the iPad.  I'm yelling, "Mike!!! Mike!!!" through the house trying to find him probably sounding like I'd lost my mind but I was so afraid it was a fleeting moment and something Carson wouldn't do again and I didn't want him to miss it.

Not only is Carson now signing mom and dad on a regular basis but he is also signing two other things.  The first one he's actually been doing for a while I was just to stupid to notice.  Diaper.  The sign is simple.  You tap your pointer and second fingers on your hips together as if you were placing the tabs on a diaper.  He has been doing this with just his pointer finger and I honestly thought he was telling me he was wet and was asking if he would take his diaper off.  So yes, I knew it had something to do with diaper I just didn't realize he was ACTUALLY signing diaper.  Again, I'm a total idiot.

The second sign he is doing was one that cracked me up.  In the midst of the whole first night of 'mom' and 'dad', he placed one finger on his pursed lips.  I laughed and said, "No silly boy.  Mom is on your chin not your lips."  He then signs it again.  Again I shake my head and tell him he's wrong.  He looks at me like c'mon lady is it really THAT difficult? and grabs a sleeve of Ritz crackers that were lying on the coffee table in front of him.  EAT!!!  "Carson?!?  Are you signing eat???" I practically yell to him (he's standing less than a foot next to me too, poor kid).  He quickly jerks his head down once and walked away. 

He doesn't have great motor planning skills, and his fine motor seems to be weaker than his gross motor but he's getting it.  I don't know what is happening (and I'm not complaining) but for whatever reason he has been exploding over the last few weeks with new things.  I don't know if it has something to do with me being home with him now, or just more sleep since he's not getting up at 6:30 every morning to go to the baby sitter's.  I honestly have no idea but I'm loving every minute of it.

I was lucky enough to capture two of his new signs and his first meal using a fork on camera but it won't let me post them here.  Will have to figure that one out.

XX

School: Day 10

School last Monday was an absolute blast.  Carson ended up being the only kid to show up so we had the run of the place.  We showed up a few minutes early for Patty to work on stairs with him.  This week she used poster board letters (they're like post-it notes with a little sticky area on the top of the letter).  She put the letters on the wall at the top of the staircase and had him go and get one letter then bring it down to spell out his name.  He had other plans.  He would climb the stairs to get the letters but only a few of them made it to the wall.  Most of them ended up in the giant trash bin, I guess he thought he was helping clean up!

 

Down in the classroom I have to admit I was really surprised to see how good he was doing with the schedule now.  He sat on a ball-seat (half an exercise ball with a solid base) with Patty's help and was able to put the correct number in the calendar for the day of the week and even picked cloudy when they asked what the weather was like (there were only 2 options, but hey, I'll take it.)  He even dressed the weather panda in a coat and boots.  Granted he tried to put the boots in it's mouth but it was still cute.

 

 

                  Man of the hour.  Cute to see him with all the girls surrounding him. 

 

After the weather LaQuita read the best book.  It's called,  "The Night Before Thanksgiving."  We were all cracking up at the story and the pictures.  For a few minutes we were all getting really worried when the farmer was explaining to the kids at his farm that he was going to use a shiny ax to cut the heads off the turkeys.  LaQuita kept saying, "I didn't pre-read this! I hope doesn't end the way we think!"  I seriously was crying I was laughing so hard.  Carson laid on his stomach with them and read along and even pointed at the pictures they asked him to.  He does so much better without other distractions.

               Reading "The Night Before Thanksgiving".  I highly recommend it :)

Patty and Jen took turns working with Carson.  Patty had him 'jumping' off of a wooden platform onto the mats below and Jen was working with Carson trying to get those corners down with shapes.  As you can see in the picture below she is working on connect the dots, highlighting the numbers for an easier reference.

After PT and OT was finished LaQuita was using the BitsBoard App again to see what Carson could do with rationalizing what things went together and what things didn't.  He didn't do too bad.  He could find two animals out of 4 pictures and 2 shapes etc.  It was when she had it asking 'who is crying?' and it showing a picture of a little girl crying or playing in the sand that we saw what he was really capable of.  Some of them he did great.  He could answer them without any problems but when he upped it to 4 pics to choose from at first he did great but then not so much. We couldn't figure out if he was narrowing down his choices but knew the answer or if he was just randomly hitting them until he got them right.  Some he would get on the first try and then if you redid it, he wouldn't find the correct picture until last.  It's very frustrating because you just don't know what is going on inside that little brain of his.

Amber was really impressed with how great he had done.  She kept trying to convince me that he needs to be there full-time.  I told her that I would think about it.  She told me that she has decided that since she doesn't feel comfortable leaving her baby with anyone she doesn't know that when it's older and her mom can't watch it anymore she wants me to do it.  I just laughed and told her that I'm glad she finally feels where I'm coming from feeling very hesitant to let Carson go to school full-time and her kid will talk!  Imagine not having any clue how their day was other than what you're told by others.  You just don't know if what they are telling you is 100% the truth.  I told her that I wanted time with him to myself since I really never got that 1 on 1 time with him like I did Baylee when she was little.  She told me that she wants him there starting in January after the holidays.  I'm still on the fence.  I know he likes it there but I'm there and I think that's a major factor.

So we left with connect the dots papers and homework to try to get him to possibly write 2 word phrases: ie want milk or eat food (pizza, whatever) plus whatever else we can get out of the kid.  Onto the next.

XX

 

Ophthalmology

Last Friday Carson had an appointment with an ophthalmologist.  When he was born we noticed that when he would look to the right his left eye would cross in the middle, making it look like he was staring at his nose.  Mike and I never took much notice to this because he had already had so many doctors and appointments and it didn't seem to bother him.  Plus it didn't happen all the time, it was just if he looked really hard to the right.

Last year at Carson's genetics appointment I decided to mention it to his doctor.  To my surprise, he became very concerned.  He told me that he needed to see a cardiologist to check his heart and an ophthalmologist for his eyes.  He said out of the two the ophthalmologist was the one I should see first.  Again, I thought it may just be a lazy eye muscle and I left there confused.

At our first appointment we saw a woman who was wonderful with Carson.  Because he doesn't speak we had to get creative in the way we were able to get answers out of him.  Instead of saying, "what do you see?" we would have to ask, "where is the _____________" and see if he could point to it.  Doing this we were able to test his depth-perception and check to see if he is color-blind.  Both were normal.

Actually doing the eye test was a little harder.  For one, they dilated his eyes.  Carson is very light sensitive already because of his SPD.  They were nice to let us stay in the room with the lights out until it was time to be seen.  Usually they make kids go back out into the waiting room.  After the half hour needed to wait they came back to do the exam. 

Carson is always very worried when it comes to people getting close to him.  (I know that this is because of his first ENT that he had when he was little and the guy actually held him down to poke around in his ears.  Trust me-that won't ever happen again.)  He has a tendency to scream and kick and try to push people away.  I basically have to put him in a choke-hold and hold his legs back with mine so she can get close enough to see.  In holding his head still and making his eyes track an object from one side to the other, she gave me her preliminary diagnosis: Duane Syndrome.  I had never heard of this, or at least I didn't think that I had.

Below is an outline of Duane Syndrome.

Duane Syndrome

What is Duane syndrome?

Duane syndrome, also called Duane retraction syndrome (DRS), is a group of eye muscle disorders that cause abnormal eye movements. People with Duane syndrome have difficulty rotating one or both eyes outward (abduction) or inward (adduction).

How do normal eye movements occur?

Six muscles, which control the movement of the eye, are attached to the outside of the wall of the eye. In each eye, there are two muscles that move the eye horizontally. The lateral rectus muscle pulls the eye out towards the ear and the medial rectus muscle pulls the eye in towards the nose. There are four other muscles, which move the eye up or down and at an angle. Each eye muscle receives the command for movement from cranial nerves that exit the brain.

What is the cause of Duane Syndrome?

Duane syndrome is due to miswiring of the eye muscles. The “mistake” probably happens around the 6th week of pregnancy and is due to poor development of tiny parts of the brain stem that control the eye muscles.
In Duane syndrome, the sixth cranial nerve that controls the lateral rectus muscle (the muscle that rotates the eye out towards the ear) does not develop properly. Why the nerve does not develop is not yet understood. Thus, the problem is not primarily with the eye muscle itself, but with the nerve that transmits the electrical impulses to the muscle. There is also irregular innervation of a branch from the third cranial nerve, which controls the medial rectus muscle (the muscle that rotates the eye toward the nose). This is why abnormalities may be found in both left gaze and right gaze.

Who gets Duane syndrome?

Duane syndrome affects girls more often than boys. In addition, the left eye is more often involved than the right eye. The reason for this is not known. Around 20% of Duane syndrome patients have both eyes affected. No particular race or ethnic group is more likely to be affected.

What are the other characteristics of Duane syndrome?

• Strabismus-the eyes may be misaligned and point in different directions at all times
• Head position-patients often maintain a head posture or head turn to keep the eyes straight
• Amblyopia-reduced vision in the affected eye.
• Eyelid narrowing-the affected eye may appear smaller than the other eye
• Upshoot or downshoot-with certain eye movements, the eye may occasionally deviate upward or downward

Is Duane syndrome congenital (present from birth)?

Duane retraction syndrome is present from birth, even if it is not recognized during infancy. An abnormal head posture and strabismus are often visible in old photographs taken in early childhood.

Is Duane syndrome hereditary?

In 90% of cases, the patient has no family history of Duane syndrome. Ten percent of patients will have an affected family member and these tend to be cases where both eyes are involved. There is currently no test that can determine whether a patient has a hereditary form.

Are there different types of Duane Syndrome?

Duane syndrome is often characterized by whether the primary abnormality is a reduced ability to turn the affected eye(s) outward (type I), inward (type II), or both (type III). Type I is the most common form of Duane syndrome. and affected patients will characteristically have a head turn towards the involved side, and will appear esotropic (crossing inward) in straight ahead gaze.

Do Duane syndrome patients have other eye problems?

The problem with the 6th cranial nerve is usually an isolated condition and the child is usually otherwise completely normal. With careful follow-up, the long-term prognosis for good vision is usually excellent.
Occasionally, Duane syndrome may be found in association with other eye problems, including disorders of other cranial nerves, nystagmus (an involuntary back-and-forth movement of the eyeball), cataract, optic nerve abnormalities, microphthalmos (abnormally small eye), and crocodile tears.

Do Duane syndrome patients have non-ocular medical problems?

Not usually, however, some patients with Duane syndrome have other problems, such as hearing impairment, Goldenhar syndrome, spinal and vertebral abnormalities. There is also an increased frequency of Duane syndrome in patients with thalidomide exposure.

When is Duane syndrome treated?

For the majority of patients, Duane syndrome does not require surgical treatment. Surgery for Duane syndrome is indicated for one of four reasons:
• To reduce strabismus
• To eliminate a socially unacceptable head position
• To eliminate a significant upshoot or downshoot.
• To eliminate disfiguring enophthalmos.
The goal of treatment is to restore satisfactory eye alignment in the straight-ahead position, eliminate an abnormal head posture and to prevent amblyopia. In most cases, eye muscle surgery is required. Because the function of the affected nerve and muscle cannot be restored, the other eye muscles are adjusted to compensate and allow for better eye alignment.

How successful is surgery for Duane syndrome?

Surgery cannot fix the problem of nerves that are miswired.  By moving the eye muscles surgery can compensate for the miswiring. Because surgery doesn’t “really” fix the problem, surgery cannot restore normal eye movement, but surgery can (and usually does) substantially improve the situation. The full effect of the surgery may take some weeks to become apparent.  There is a low incidence of unexpected or inadequate results.

The interesting part of all of this is that I thought that his left eye was the problem because of the way it turns inward.  I was wrong.  His right eye can't turn all the way outward when he is looking to the right so the left eye LOOKS like it is crossing because it tracks the way it is supposed to and the right eye stops at a certain point!  Because of this he cocks his head slightly to the right to align his eyes to see correctly.

So we left the office into the bright world with instructions to follow-up in 6 months with a different ophthalmologist in the practice to get a second opinion and if he agreed then this was the final diagnosis.  Not the end of the world, just one more thing to add to the list of my interesting little guy.  We hid for the rest of the day (only about an hour) at the mall that was close to the office to give his eyes a break from the sun.  Unfortunately, his eyes were dilated for three days!!

When we went for that second appointment Carson would not cooperate.  The didn't dilate his eyes this time but I think since we were seeing a man it freaked him out.  This doctor was not convinced.  He said that because Carson's face isn't symmetrical, he thought it was just an optical illusion that his eyes weren't tracking together.  He asked us to wait another 6 months and return.  At this appointment they would dilate his eyes again and hopefully we would know 100% what was going on.  So that was this appointment.

We were able to get an eye test this time.  She had me sit in the exam chair with him on my lap.  We had him use his finger and 'draw' the letter that he saw on the screen.  It was cute because the letters were in boxes that had open sides.  When he would write the letter he would include the two sides of the box: / L / .  It was cute.  He was able to see them until they were really small, almost to the point where even with my contacts I was having to squint to see them.  When it came time to dilate his eyes I warned her that his eyes had stayed dilated for so long last time.  The girl was really nice.  She apologized and used a milder drop in his eyes.  This time they did not let us wait in the room in the dark but I had come prepared.  I brought his stroller and towels.  We sat in the bright waiting room with the hood of his stroller blocking the light from above and towels on the top of that blocking the sides.

                    This is in the waiting room, looking a little high.  Look at those pupils!!

When we they were ready we went back to the room again and this time the doctor was able to get a better exam out of Carson.  We ended up using his iPad to use as our tracking object.  So we have our final diagnosis.  It is Duane Syndrome.  As of now he doesn't need glasses or surgery which is great.  Although, with a missing cranial nerve it's not like you can just put one in so I'm not really sure what surgery would do anyway.  We go back in a year.

On a side note I did end up finding out on Facebook that there is one other little boy who is around Carson's age (with his deletion) who was also diagnosed with this.  It's funny that both these boys already carry very rare diagnoses but now have another rare diagnosis on top of the other one.

XX 
 

Genetics Appointment

Thursday was Carson's annual genetics appointment.  Every year near his birthday we see the same man who came to see me in my hospital room the night Carson was born, taking hand-written notes and being so sympathetic.  The appointments are long and in-depth.  Mike and I really weren't prepared for the first visit at his office when Carson was 3 months old.  They ask questions that you really wouldn't think are relevant like; Is it possible that you and the baby's father are genetically related?  We actually laughed when they asked us this but obviously it's happened before.  They wanted everything.  Who has had what conditions for as many generations back as we can think of.  Mike is pretty much estranged from his entire family so we really don't have accurate information on much of his family.  There are a lot of mental health issues with the men on his father's side of the family, depression, bi-polar disorder, personality disorders, paranoid schizophrenia, the works, including with his father which is the main reason we don't have anything to do with them.  It has become more of a safety issue more than anything else.  The major issues on my side of the family are heart conditions, eye conditions (glaucoma etc.) and my paternal grandfather had Huntington's Korea - which to me always kind-of seemed like Parkinson's.  He shook badly and lost his motor control and his speaking ability. 

Before the doctor comes in to see us there are a few things they do at every visit.  They take Carson's height and weight and they measure his head.  He does okay with the weight because it's a scale that isn't real sensitive to movement so he can stand on his tip-toes and move about and it will still get an exact number.  The height and head measurements require him being touched so of course the screaming and the kicking start.  I have to admit I'm getting better at restraining him. 

They then move us to another room and ask the normal questions about medications (vitamin only), home life, stress level (for him, not me), diet etc.  After that the assistant leaves and we wait for Katie the doctor's assistant to come in.  She always comes in first and goes over all of the preliminary stuff with me then goes to discuss with him before he comes in to talk.  Last year when we left our instructions for Carson was to give him a job to let him know he has a place in the family.  The job we gave him was to throw away his diaper.  It sounds funny but to this day he will do it and then wait for his much-deserved applause.  He is so proud of himself, which makes us very proud of him.

Katie's questions for us start with her asking how he is doing using his iPad.  When I tell her that he is now communicating more with it she is pleased because it is a huge improvement from the year before.  We then briefly talk about the episodes with scratching and pinching when he is mad.  I explain to her that it is usually me that gets the brunt of the anger but sometimes he does go after his sister or the dog.  She asks how he is doing in school and whether or not he is acting appropriately with the other students in the class and I explain to her how he is doing itinerant right now so he isn't really with other kids too much.  She told me that they have a behavioral clinic at Children's Hospital that they could send Carson to, to see if they have any suggestions to combat the aggression before he gets too big and I can't handle him anymore and he hurts me more than just breaking the skin.

The conversation moves to his diet.  It is interesting that just two days before his pediatrician mentions to me that he has gained weight and then she is questioning what he is eating too.  I think it's funny cause the little guy really is skinny.  He is just getting fuller in the face and the tummy.  I know he needs more of a variety of food but I'm doing the best I can with a stubborn child with sensory issues.  Again, I'd rather him eat chicken nuggets and keep it down rather than eat a bunch of food then throw it up because it's slimy.  She asks about his eyes and his ears.  The appointment for ophthalmology was the following day so I didn't have a lot of information for her yet.

She asks about his heart and if he has been seen by cardiology, which he has.  I'm not sure if I have touched on that or not but since Carson has hypotonia (low muscle tone) we have to keep an eye on his heart.  The heart is a muscle and could weaken over time.  He saw a cardiologist last year and thankfully with an EEG and echo cardiogram we found out that currently his heart is healthy.  We go back bi-annually.  The hard part about these tests is they require you to be perfectly still and quiet.  No easy feat with a small child. 

The next question was about seizures.  There are a few children with his deletion who do have petty-mal seizures.  Carson has been known in the past to do this kind-of blank stare thing where you don't know if he is just daydreaming or if he is spacing out.  I only notice it when he is restrained (like in the car or at dinner) he will sit perfectly still and just have a complete blank look on his face.  You can snap your fingers or touch him and he won't budge.  There is a medical condition known as absent or 'ghost' seizures.  We have questioned in the past if that is what is happening or if he is just being a space cadet. 

Katie excuses herself and leaves Carson and I to ourselves for a few minutes while she fills in the doctor.  I get Carson out of his stroller and let him hang out with me for a few minutes.

 

This is Carson saying hi :)

 

After ten minutes or so the doctor comes in.  He takes a few minutes to study Carson's face and demeanor.  He always makes notes about changes in his features.  I was really surprised that Carson wasn't afraid of him.  He was actually taking his hand and trying to show him things on his iPad.  I have never seen him do this before with someone he doesn't know, especially in a hospital setting.

 

The first thing that he discusses with me is the aggression.  He told me that it's actually normal childhood development for him to lash out at me in particular but also with Baylee.  He said that most children do not hurt their dads because they won't put up with it and also they can be intimidated by their fathers.  He said with his communication problems that we will have to try to catch him before he hurts someone so he doesn't get big enough to do major damage.  He said that the randomness of his lashing out could be part of his SPD.  He told me to just sit in a room.  No TV.  No radio etc.  Just sit and pay attention.  You will hear the hum of the electricity, the feel of the air on your skin, the sound of birds and clocks ticking and wind etc.  All things you don't really notice in your normal day-to-day lives.  Things we can tune out.  With Carson, he can't tune those things out.  Every single one of those things and more are all processing through his brain every minute of every day.  He said if you add being pissed off about something to that process going on in his head, it is just the thing that sets him off.  Only because he isn't really thinking about what he is doing, he is just reacting to a situation.  It makes total sense.  I came home and that night sat in my bed room alone for a few minutes.  I was amazed at how many things really are going on.  The only time I notice them is when the power is out and you notice how quiet it is.  Especially living where we do.  It is very rural so when it's quiet, it's REALLY quiet.  He said that the behavioral clinic can not only try to give us suggestions about ways to combat these episodes but if medication is needed later on (no!no!no!) then we're already in the system.

 

He brought up what I was planning to do with him for school and I told him that I am really leaning towards home school.  I briefly explained my little sister being in college to become a special education teacher so I was hoping that I would have her on my side to help with a curriculum.  He mentioned that some school systems will actually let you home school while still providing services to the child for PT OT and speech.  This way the parent does all the work education-wise but the school still gets to count them for grants etc.  I am going to see if his school system is one that does that, or if maybe Baylee's does since she is in a different district.  If not, I am more than happy to find an outside agency to provide services for him.  He just told me not to just dump him into the school system and hope for the best.

 

Another thing we discussed was Carson's genitals.  He had to have a hypospadias repair done when he was 10 months old to correct the opening of his penis.  It was not where it was supposed to be.  Even after surgery it isn't perfect.  Not exactly something I should be discussing in public but it actually lead to a very interesting conversation.  Carson one day will hit puberty and will probably have feelings and desires like everyone does.  The thought of that scares me to death.   It's a bad example but Baylee's rabbit just hit maturity and he humps everything in sight.  Carson already loves to be naked, this is just going to get worse.  I guess I should be happy I don't have a girl and have to deal with periods etc. but at least now you can get the Depo shot and that lasts for 5 years.  I can't imagine what would happen if Carson figures out what sex is.  In the movie I Am Sam, Sam is actually much more mentally mature than Carson is (at this point anyway).  What would happen if he fathers a child?!?  Ugh.  Not something I should be stressing about now, he's only 5.  

 

He touched on his weight and said that right now he looks very healthy but the reason they question his weight gain so much is because many people with chromosomal abnormalities end up becoming morbidly obese and we don't want that for Carson.  Completely understandable.  He also said that we need to keep an eye on the blank stares because he could develop seizures at any time because there are several other children who do have them.

 

The last thing (that I can remember) that we talked about was trying to get social security disability for Carson.  Because he will need services for the rest of his life he said to try to get it for him.  He would then get Medicaid as a secondary insurance to the one we already have through Mike's work.  If we are denied then we've only lost a few day's worth of time.  That is going to be my next project if I can ever figure out a time to call.  You sit on hold forever.

 

I can actually say that I left there feeling pretty good.  Most times I'm crying by the time I hit the elevator because I think he is doing so great and then they knock me back to reality.  This time I didn't go in with any preconceived notions that Carson is gaining speed and it was the best way to go.  When we first started going there we were told that he would follow us until Carson was 5 but then at this visit he said for us to come back in a year.  I'm okay with that.  I like hearing what he has to say even if the appointments are long.  We were there for over three hours.  Then we had an hour drive home.  The next day we would be at a different Cincinnati Children's branch for ophthalmology.

 

XX

 

5 year check-up

Tuesday Carson saw his pediatrician for his 5-year-old check up.  First let me say that I love his pediatrician.  There is several docs in the group but I always request the same one when it comes to the annual checks.  He very good with Carson and has been very open and honest with me since the beginning.  If he doesn't have a clue about something he will direct me to who he thinks would be the best for us.  If he feels that someone is a great doc but has a horrible bed-side manner he tells us.  He doesn't pull any punches and that is something that I respect.

Carson always starts to get nervous when we pull into the parking lot and he can see the building.  His cheeks start to get red and he becomes more audible.  When we signed in they took a picture of him for their records.  He's a ham so he smiled big for them.  He was happy when he found a bead maze to play with in the waiting room.  He pretended not to hear Michelle when she called him back to a room.  Michelle is a really sweet girl.  She has been there since I started bringing Baylee to the practice.  She knows us by name and will ask where the other kid is if I only bring one and not the other.

I picked him up and took him back.  She asked the usual questions about home life and animals and baby-sitters etc.  It felt good to tell her that he doesn't have to go anymore.  Normally at the yearly visit they will check eyes and ears and do a urine sample but because he sees ENT and ophthalmology and is in diapers none of these things were touched on.  It makes things easier for Michelle and I'm okay with that.  She was able to do height and weight and tried to get a blood pressure but with his sensory issues he just screams or holds his breath so it won't get a reading. 

Back in the room she handed me a paper on what your child should be doing at the age of five.  Of course I don't even bother to read it.  What's the point?  I was interested in the paragraph labeled: Getting Ready For Kindergarten.  Here is the list they gave of things to consider before deciding if your child is ready for class:

Keep hands to self while in line; sit and pay attention for at least 5 minutes; sit quietly while listening to a story; help with clean-up activities; work and play with other children in small groups; do what the teacher asks; get dressed; and use the bathroom without help.  Let's see.... no, no, no, possibly, nope, nope, definitely not and not in a million years.  This wasn't starting out well.  Can your child stand and hop on one foot? Throw and catch balls?  Hold a pencil correctly? Cut with scissors? Copy or trace a line and circle?  Again. No, not really, sometimes, when he wants to, no.  It's almost comical.  I mean with Baylee she was always ahead of the curve.  He is always behind.

I stripped him to his diaper which made him very happy but as soon as I try to set him on the side of the table just for some extra support since I was holding him he began to scream and lash out.  He knows being on the table means things are going to happen to him.  Doctor's appointments are not easy.  The bigger Carson gets the harder they have become.  He is now able to fight much more effectively.  Lucky for me his pediatrician knows this and tries to make it easy on both Carson and myself.  As soon as he comes into the room Carson starts screaming and scrambles into my lap.  The doctor just laughs and tells Carson that if he could examine him from the hallway he would.  "We're old friends.  You just don't remember." he tells him.  Carson just screams.

He first asks me what my concerns are.  The only one I had was something that Patty had pointed out the day before.  She mentioned that he has 'soft feet'.  She is concerned with the way he pronates his feet because of the lack of support because of his low muscle tone.  His legs bow inwards and can possibly do damage to his hips.  Looking at his feet he decided that the best route to take would be to see a podiatrist.  He said that orthopedics usually lean towards surgery more than he would like to see so he was more comfortable having us see them first. 

We discussed the option to have a handicapped plaque for my car, something I was never really gave much thought-unless we were parked out in East Bufu and I had forgotten a stroller.  He can't walk far on his own.  It doesn't help that he really isn't self-aware of his center of gravity and leans forward most of the time.  He will usually take a few steps and then turn and raise his arms for me to pick him up.  At almost 50 pounds I know it's not going to be long before I can't carry him anymore.  I asked him if he felt that it was appropriate and without hesitation he said yes.  He explained that with all of the stress and hurdles that we deal with on a day to day basis if there was one thing that he could do for me to make my life just that much easier he was happy to do it, so I agreed.

We also briefly talked about the fact that Carson has gained 8 pounds in seven months.  I had noticed that he was chunking up a bit (in the face) but wasn't concerned since he had always been so skinny.  He really pressed the food issue since Carson is such a picky eater...lately it's been chicken nuggets and milk for every meal-including breakfast.  But what can you do?  A child with the will and the comprehension that he owns his body and nothing will go in that he won't allow not to mention a gag-reflex that will make him throw-up EVERYTHING if something slimy, gooey, mushy etc sneaks in.  I have to pick my battles.  At this point I'm just glad that he's eating.

When it came time to actually examine him, we took the "easy" approach.  I used my body as the table and restrained him the best ways I could.  He checked his ears (lots of wax but thankfully the tubes are still in those tiny ear canals), his eyes, his belly, boy parts and his reflexes.  I feel bad for the kids waiting in the next room cause the screaming coming from ours had to be terrifying lol.  We had the option to give him a flu shot but I decided to let it go for now.  His sister needs one too and honestly I didn't want to do it without a little back-up from Mike.  The doctor cracked up as he told me about a recent patient with severe autism that they had to chase and tackle in a back hallway to give him his shots.  They sat on him.  Really.  The mom was in on it but he said it was comically wrong on so many levels.

He as always tells me if I have any concerns to call.  I'm the quarterback and he's just the back-up.  I call the shots.  I like that.  Just the fact that he isn't pushy about what I do and don't do for Carson.  He knows for the most part I am pretty laid-back about things.  I don't want him to become a science experiment just because he has a condition that is so rare.  He did touch on the homeschooling issue and told me that there are usually good things that come from it, as long as I don't let him become unsocialized.  When I told him how he acts away from me he asked who Carson does trust.  The answer: My mom and my 12-year-old niece Holly.  That's it.  I think then he really understood why I am so concerned about him going to school.

Carson was happy to put his clothes back on when they left the room.  He knew it was time to go home.  So we were off with our referral and script in hand.  Not bad news.

The next day I had to drive over an hour one way to pick up our hog from the butcher.  I found a local farm that is raising animals with non-GMO feed and the cows are free-range only.  I am trying to convert to a more wholesome diet for all of us.  I recently read a book called, "Animal, Vegetable, Miracle" by Barbara Kingsolver.  Great book.  I highly recommend it.  It has really changed the way I look at and buy my food.  Mike is a type I diabetic and honestly myself and Baylee could use to lose a few pounds so I am trying everything I can to stay healthy. 

Carson was great in the car the entire time.  All country back roads.  When we got back to town we dropped off my mom's half at her house and then headed to the BMV to get his handicapped plaque for the car.  It was a very simple process.  I had a form to fill out and turned it in with my script from the pediatrician.  It cost a total of $3.50.  It will be renewed next year if it's needed.  I can pretty much say now that it will be unless he gets significantly stronger in the next 12 months.

XX

School: Day 9

It has been a crazy week around here.  It's my first week home from work but it really hasn't felt like anything different yet because we have been so busy.  Monday Carson had school, Tuesday he had an appointment with his pediatrician, Wednesday I had to go to the BMV (will go into that later), Thursday Carson went to see his geneticist and today we went to optometry. 

So first things first.  School Monday was great.  We had an IEP meeting a half an hour before class started and I am happy with where things are going.  I did have a question about one of the tests that was listed that I didn't touch on last week because I wasn't really sure what it meant.  It is called ASQ-SE (ages and stages questionnaire) and it's a packet that I fill out with questions about the way he plays, eats, gets along with others etc.  He scored a 110.  I asked what this meant.  Jody told me that the cut-off for concerns was 100.  I got excited.  It basically meant if he had scored a 99 there isn't any concern about his behaviors.  But then Amber corrected Jody.  The cut-off is actually 70.  I wasn't really surprised.  Just another reality.

After all the forms were signed I was told how this last year will go for Carson.  He will be reevaluated in February as an exiting strategy from pre-k into kindergarten.  I will not be able to red-shirt him because of his birth date.  The only way to do it is if your child will be 6 turning 7 after December 1.  He misses it by less than two months.  So for now, moving forward, I am going to wait until February and that evaluation before I make any more decisions about where to go from here.  The results of those tests will determine where he falls on the scale cognitively.  I know not to get my hopes up.  I will be happy either way.

Carson went with Patty and began on the stairs.  She had him going up the small flight of three stairs, getting leaves with numbers on them and carrying them down to a poster with the tree to match the numbers at the bottom.

  After the stairs Carson and Patty went down to Amber's room while I was in the hall talking to Amy.  I tried to stay out of the room for a few minutes to see how he would do without me and as far as I could tell he did pretty well.  Jen said that he sat on a ball and listened to the calendar and weather songs.  He then went to a table to cut.  It was then that he looked for me and became upset that I wasn't in the room.  I cut my conversation short with Amy to attend to him.  I really didn't do much. I just came into the room and let him hug me before continuing.  Patty had him climbing up onto a wooden landing and jumping off.  He was doing pretty well too.  She said that he was doing about 50% of the work.  When he was first diagnosed with hypotonia I was told by Jan his original physical therapist from when he was about 2 months old until he was 3 that he would probably never jump.  I love it when he can prove people wrong.

 

Jen's new goal for Carson is to be able to draw letters and shapes etc with 'precision'.  She has began drawing shapes with dot stickers to show him where the corners of letters should be.  He is supposed to connect the dots.  For his first time, I don't think he did too bad.

They are all squiggly and I think it's adorable.

After PT/OT Carson went to speech with LaQuita and Jen.  Jen helped try to get him to focus by having him on his stomach on a therapy ball while he worked with LaQuita with the Bitsboard App again.  He was doing great with matching the correct answers again.  It makes me so happy that she has found something that she can effectively use to show what he does actually know when it comes to observation (which kid is swimming, eating, smelling a flower etc.).

I am trying to stay as hands-off as possible now because that is what they want me to do in anticipation that I may let him go a few days a week with Amber's full class.  Because of that I know that I don't have a lot of information about what is going on with his therapy.  I will try to do a better job next week but Baylee will be with us since her school is observing Veteran's Day and she will be off.

XX

Playground Blues

Last Tuesday my daughter Baylee had dance class, something she has had every Tuesday evening since the beginning of last school year.  Usually my husband Mike is off work in time for me to drop Carson off at home before taking Baylee to her class but this past week we weren't so lucky.  Mike was stuck in Indiana late on a job so I had to take Carson with us.  Not a big deal, it just makes things a little more hectic.  Instead of just getting Baylee ready, I had to get him changed (diaper etc) and get a bag packed with extra things that I may need while we were there.  I usually only have about a 10 minute window after I get home from work and picking the kids up before having to leave again which is stressful for anyone.

She has ballet, tap and jazz classes for an hour and parents are not allowed to be in the room.  On top of that, this year the school instituted a new rule not allowing anyone in the school between certain hours because of a learning academy that they have going on for the safety of those students.  (Understandable, and hopefully unnecessary).  They were supposed to have opened an entirely new wing of the school for us parents to wait in since it is starting to get colder but they haven't done it for us for the past few weeks.

When we pulled up to the school another mother and daughter were already heading to the door so I asked if I could just let Baylee out and have her walk with them to class so I didn't have to take Carson up to the doors (Its about 400 feet) since I had accidentally left his stroller in the garage.  Baylee hopped out and I went to go park the car.  Upon getting Cman out of the car, it was noticeably cooler since the sun was going down, so I fought to get his winter coat on him -  certainly not his favorite thing.

As we were walking towards the doors Carson noticed the playground.  The school that we were at houses pre-k all the way to second grades but the playground we were walking by is only for 1st and 2nd grade classes.  There were a few kids playing there.  I am assuming that their siblings were at other practices and the parents were just killing time like I was trying to do, although the only parents I saw that were even remotely near were sitting in a van (2 women) looking at their cell phones and not even bothering to pay attention to their kids.

As I was carrying Carson he was making high-pitched squealing sounds and leaning his body in the direction of the playground.  I was having this internal debate about whether or not I should attempt letting him play there.  I honestly wasn't worried about the other kids or even the equipment itself.  It was more because I was there by myself with him and knowing how he liked to climb up the slide at school I was worried that he would try to do something similar and I would end up looking stupid trying to wrangle a screaming and kicking kid away from the playground because I am not strong enough by myself to keep him safe.  In the end I figured he deserved to go have some fun.  It was my fear not his and he really really wanted to play.

I helped him up onto the raised area and held his arm as we navigated our way over to the large jungle gym that had multiple slides on it.  There were little steps up one side and then a curved slide that was low to the ground so it was easy for me to stand beside it if anything went wrong.  I helped him up the stairs and watched as he slowly sat down at the top of the slide.  I had just enough time to get back down to the bottom.  He slid down and immediately went back to the stairs to go up again.  He did this a few times before he caught the attention of the other kids on the playground.  One cute little girl with red curly hair came up and asked what his name was.  I told her and she then asked how old he was.  When I said five the little girl balked.  "He's one year older than I am." she said.  "How come he needs so much help?"  I smiled at her and told her that he had low muscle tone and had a hard time controlling his body.  She nodded and went on her way.

As she left a little guy named Rider came up to us.  He was three he said.  He was really happy to have someone like Carson be around him.  Carson climbed the stairs again but went in a different direction than the slide.  He found what is supposed to be a swinging rope bridge but it's made of metal.  It is built like  a rope bridge in the sense that it is low in the middle and high on each end.  Carson for whatever reason thought it was another slide and tried to slide down the bridge.  He was really annoyed when he only went down a few feet and then couldn't climb back up because the pitch was too steep for him.  I couldn't help but laugh as I tried to rationalize with Carson that it just wasn't worth it.  It wasn't a slide and he wasn't going to get the thrill of going to the middle of the bridge on his butt and then have to crawl back up to the top. 

Rider seemed to get that Carson was having a little trouble and said he was going down the slide again.  Carson followed.  They were 'playing' on the slide together - although it wasn't even turns because Carson just doesn't move as fast as Rider and Rider was getting more turns because of it.  Out of no where after probably six or seven minutes total Rider's mom rushed over to get him.  She apologized to me (!?!) and told Rider that he was allowed to get his treat now instead of later (whatever that means) and Rider was quick to follow her back through the parking lot to where ever she had come from.  I tried not to take it personal but I know that she got him off of the playground BECAUSE of Carson. 

Later when I called my mom about it she questioned whether or not she did it because she knew something about her kid that I didn't.  Like maybe she was afraid that he was being too pushy or maybe was going to hurt Carson.  I'm honestly not sure.  To me it seemed all too coincidental for it just to be he was getting a treat.  I don't know.  Maybe I'm paranoid but I just don't feel right about it.

Once they were out of sight I took Carson over to the playground on the side of the building that is designated for pre-k.  There are only a few things to play on but it is fenced in completely so I didn't have to worry about him taking off on me - not that it would've mattered since I didn't leave his side but it's just the principle of the whole "piece of mind" thing.  After he had checked out his surroundings, walking the entire area of the fence and watching the cars in the parking lot and beyond to the road where cars were whizzing by he wanted to swing.  This playground was nice because it had an adaped swing that doesn't require any type of balance (think baby swing only bigger).  It was nice just the two of us.  The sun was going down and you could hardly hear the noise from everything going on around us.

After ten or so minutes he was tired of swinging and went over to the pirate ship on the other side of the yard.  It is basically a shell of a ship with gangway stairs to go up a level and a place to crawl through to be in the bow of the ship.  He liked climbing the stairs because they were narrow and had rails on each side so coming down he had more confidence. 

By this time it was almost dark and had gotten much colder.  I picked him up and carried him back to the car.  I sat him in the passenger front seat and got in on the driver's side.  I started the car, took off his coat and turned on the heat.  We sat and got warm while he played with the dials on my radio.  I couldn't help but watch the kids on the playground running around and laughing and playing with each other.  Many of the kids were either the same age or younger than Carson.  This is one of those instances where I feel like Carson is missing out on so many things.  It hurts so much to think that if he only had a FRACTION more of one specific chromosome things would be so much different for us and if he had just a FRACTION less of the same chromosome things would be so much worse.

I understand that I am lucky to have the things that I do in my life (my children included).  For the most part they are both healthy, they both make me so incredibly proud to be their mom.  I know that a lot of times it sounds like I'm just doing a lot of complaining.  I don't mean to.  I am just trying to be honest with myself and sometimes I can't help but be mad at the way things are or jealous of other families who haven't been stressed since day one of their child being born.  Sometimes I wish that Carson had been born without any special needs because it would make my life so much easier.  But at the same time, I don't know if I would appreciate the little things as much.  Like yesterday when he wrote 'MOM' on his iPad and gently kissed me on my forehead.  That right there is love.

XX

Happy Halloween

Yesterday Carson was an astronaut.  Halloween was Thursday but we were hit with a really bad storm that brought with it 80mph winds at one point during the night.  Our local chamber had an emergency meeting at 11 am and decided for public safety that it would be best to move Trick-or-Treat to Friday.  I was happy with that because Thursday was my last day of work and it took the pressure off of me to get all of my final work done before I was able to come home.

Yesterday Carson got up at 7 am, right at the time I was planning to get up to get Baylee ready for school so it worked out perfectly.  Once Baylee was on her way to school we came home and hung out most of the day.  At one point Carson was running around the house naked since he hates wearing clothes so much and he wrote 'wet' on his iPad.  Not really sure what he meant I checked the iPad to make sure that he hadn't peed on it, but it was dry.  It then dawned on me that he may be telling me that he did need to pee though.  I asked him if he needed to go pee in the potty like a big boy.  He got up from the floor and walked into the guest bathroom.  It took a little coaxing with warm water and the promise of a sucker but he did eventually pee in the potty!

I have to admit I was pretty excited about that.  It seemed to me like he was trying to communicate the best he knew how to tell me that he needed to go.  Maybe I'm wrong.  Maybe he was wanting to go swimming, I really have no idea, and because of that I am going to stand firm that my theory is correct and he needed to pee.

When Baylee got home from school it was time to get ready to go trick-or-treating.  I did her zombie make-up first because I knew that it would take a little bit.  When I went to check on Carson in his room it was apparent that he had pooped.  I went into the living room to grab the open pack of wipes and by the time I made it back to his room he had taken off his diaper and was bouncing on his floor.  Unfortunately I had a bit of a mess to clean up.  It was everywhere.  On the floor, all over Carson and some of his toys.  Baylee was lecturing him on how disgusting and unsanitary it was to have poop all over the place.  If it wasn't so sad it may have been funny.  When everything was cleaned up Mike got Carson dressed while I finished the last details for Baylee and we were off to get some candy!

We drove to my sister's old neighborhood and met up with my best friend Sarah and her family.  We bought the wagon with us thinking that it would probably be more comfortable than the stroller that Carson has now out-grown.  His legs now dangle off the front of it.  But much to our surprise he wanted to walk.  I don't think he every got the idea of why we were going up to strange people's houses but I don't think he cared either.  He was just following his sissy around.  We would have to walk with him, hold his bag and hold his hand (or arm) to steady him but you could see that he was having a good time and seemed to be really proud of himself for trying to be a big boy.

After about a half an hour he wanted us to carry him most of the time and absolutely refused to get into the wagon.  At one point he was falling asleep on Mike's shoulder and when I asked him if I could hold him he shook his head no.  When he did finally come to me the police pulled up beside us with their lights on and snapped him right out of dreamland.  He is fascinated with police cars, ambulances and fire trucks.  An officer got out of the car and came over to us and gave each of the kids candy.  Carson was more happy to be so close to a real police car.

Baylee was in a hurry to get to more houses and Carson was really starting to get heavy so I laid him down in the wagon on a blanket that i had stuffed into the hole where his feet should've gone.  He didn't fight me to get out this time.  I think his little legs just couldn't take it any more.  He got comfortable, taking off his shoes and socks and just hung out the rest of the time.  People were cracking up at his approach to trick-or-treating but only because it was genius.

On the way back to the car we passed a firetruck on a side street and Mike grabbed Carson up onto his shoulders and took him over to see it.  They too were handing out candy.  By the time we got to the car we had been out for almost the full 2 hours and were exhausted.  Carson fell asleep in the car but woke up when we got home.  Since he had taken a power nap he was up until almost 2am.  It was worth it though.  Seeing him wanting to do it himself and being so proud of himself. 

This morning he went straight to his candy bag, put it on the floor and rummaged through it until he found what he was looking for.  A sucker.  After breakfast I let him have it.  He earned it.

 

Daddy holding on while Carson chews on his costume :)

 

 

Getting a ride!

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