Tuesday, August 31, 2010

New School Year Has Begun

Today the kiddo's started back to school again.  They were all actually looking forward to it and ready to go this morning with much anticipation of seeing their friends and seeing who's new in their classrooms.  Tristin is no longer a "newbie" at the Middle School so she was much more confident heading off this year verses last.  She was however not corporating with mom today to get her 1st day of school photo taken.  Its a tradition for the kids to make a sign with the grade they are going into (mostly so I can remember myself) and hold it for photos the first day. So..... since she didn't want to corporate with me I'm posting her silly photo on here too...See I'll getcha back girl  LOL!!!
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And here's her sign:
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Camille, there's never any need to beg her for a photo.  I actually have SEVERAL poses of her:
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Elijah:
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And the traditional, act like you love your sibling photo:
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Your Baby Can Read - Month 5

We are still keeping up the Your baby Can Read Series this summer, although I must admit we have slacked off a bit due to so much going on.  Caleb in his SPICA cast, five kids at home with their own busy schedules, gardening and canning, and just everyday chaos that finds us here at home...ends up being my only excuse for this.  The one new development that we tried to catch on camera and didn't manage to do too well is that I am writing words on a MagnaDoodle and the twins are signing them almost before I even have the word entirely written. I will try again to get this on video as its so darned cute.  When I mentioned that we are slacking off I meant that we have not progressed to Video #4 yet.  They are still watching Video #3 and doing the 1, 2, and 3 flashcard set and books as review.  I went ahead and got the next series out of the box tonight and we will begin them this week with the new video and new book.  Now that the all the kids are back in school and I can get back into a routine that I can control I plan on including this program into their daily routines again.

Keep checking back, keep with us here, we ARE still making progress, we ARE still totally amazed that our almost 5 year old non-verbal twins both with PDD Autism and Down Syndrome are responding so well to this program and are beginning to read even before starting kindergarten.  They still have another year to learn to read.  I am hopeful that their future has been changed just by one program that is teaching them in a way that we would have never thought of on our own.  We have put ALOT of work into these boys over the past four years, they amaze us each and every day and they give us so much to brag about to those that didn't think they could do what they are doing.  I have three older "typical" children before the twins and I can tell you they were not reading the word elephant, arms up, point or hippopotamus before they started school.

Friday, August 20, 2010

Cast Cooler - A product review

So a few weeks back I was blogging about Calebs accident and posting photos of the lil guy in his cast, when I had a nice gentleman leave a comment showing his concern for Caleb and wishing him well while in his cast.  He then went onto suggest a product for me called the CastCooler.  I went ahead and checked out the site with an open mind, after reading the stories and the testimonies I seriously thought this might be something I would be interested in purchasing.  I was hesitant to click on the purchase button fearing the "price of medical equipment" would be to high for me to even consider buying it.  I was plesantly surprised at the very low cost and decided to give it a try.  BOY am I glad that I did.

Caleb is a non-verbal 4 year old child with Autism, Down Syndrome and Sensory Processing Dysfunction.  I knew he was in pain or discomfort just by his actions and body language but I didn't know exactly what was going on with him.  I read about the Cast Cooler and decided that it was worth a try.  In all honesty I thought I was going to buy this product and never be able to even use it on Caleb as he's not much for being right near the sweeper when its running.  The first time I put the cast cooler on him, I did just that.  I put it on and we talked about it.  The next time, I explained to him that I was going to try to help him with his boo boo.  He looked confused but he permitted me to put the sweeper on the attachment.  It was amazing his reaction, I was thrilled that the reviews that I read on the CastCooler site were actually happening right here in my own living room.  He looked relieved, he was not scared, he had such a nice relaxed smile going on that I had to capture it with a photo.  Below is his reaction:


The cast is made of a very porous material, the cast cooler and the sweeper actually circulated the air from inside the cast and provided Caleb with some relief from the itching and it kept the cotton inside dry.  It also sucked the odor out and kept him smelling fresh like for the 8 weeks he kept the cast on.  We the cast was cut off today I was anxious to see if it was smelly or not.  It was NOT!!  Other than the little bit of urine that gathered in the diaper area that could not have been helped, it just had a slight body odor scent, nothing terrible like some of the stories I've heard before.

If you or anyone you know breaks a bone in the future (I hope not) I would recommend the CastCooler!!  I will be storing this away in a safe place for future use.  With five children, I'm certain that one day or another we may need to use this again.

Cast Off Day!!!

8 Weeks..... 8 Weeks.... that was Caleb's (and our) entire summer.. From June 24 to August 20 he wore the "big purple cast".  He sat in the stroller and on the couch for countless hours watching television, reading books, and sleeping his summer away.  Since it was not really fair for the rest of us to be outdoors enjoying the pool or doing lots of activities we all pretty much stayed home and sucked up the air conditioning right along with Caleb.
Amazingly, the 8 weeks went rather fast.  He had some amazing positions that totally did not look comfy to any of us at all....
But I guess when you don't have a choice you make due.  Caleb was a true trooper and I would never ever ever!!! wish this on any child, but if it had to be one of my kiddo's Caleb was the one that would just go with the flow more than the others.

Today we got his SPICA cast removed.  It was not a pleasant experience for an Autistic child with Down Syndrome and Sensory Processing Disorder to endure, but once the sawing was all done and the cast was removed he was actually quite exited that he could see his leg again.  He was anxious to get into the car and come home.  This was a photo I took in the car on the way home


Talk about dry scaly skin!!!!  He kept itching it the whole way home, but I think he was doing it just hard enough to remove some of the skin, he didn't make anything bleed or anything.  The GROSS GROSS thing and a recommendation I can now make to anyone traveling home with a child who just got off a very large cast in the summertime.  WARNING: Do NOT, I repeat, DO NOT roll down the windows to let air into the car.  You will have dry skin floating all over the car, including in your hair, around your face, and out the windows.. EWWWWWW!!!

We got him home and to celebrate we had his favorite dinner of Pizza and then he got into the tub for the first time in 2 months and sat and soaked and splashed in a Mr. Bubble Bubble bath for more than an hour..


I must say, I am SHOCKED and surprised that they did not recommend physical therapy for Caleb.  We were told that the healing is going to take several months and they said that sometimes physical therapists can be hard on the patients to get them back up to par quicker and she did not see any reason to make this child suffer more than he already has.  She said the his fracture site is not tender or sore, however, his joints and muscles are stiff and sore.  We are to give him tylenol for the next several days for pain and she said that if he's motivated to move around ( he is!!!!) then he will figure this out much like he figured out how to get around in his cast like he did.  Makes sense to me.  We will go back in 6 to 8 weeks for a follow up, if at that time he is still not walking to his full capabilities then we will discuss further therapies.  WoW, go Caleb..  I am excited to see how things come along in the following weeks.  I will say that we have been home a whole two hours at the time of this blog and he is not moving his leg hardly at all, its still straight out and in the same position it was in the cast.  At one point, I think he got brave and tried to bear weight on his knees and fell to the ground crying.. just like an animal has instincts on how to heal, so is true of my boy Caleb.  We shall see how he progresses and I will share it all with you.

We plan on hitting the pools next week, the last week of summer before school!!!!

Monday, August 9, 2010

Beautiful Butterfly

Camille loves butterflies.  Butterfly clothing, necklaces, school notepads.. rarely do we get the chance to find a big beautiful butterfly and enjoy it.  We went away for the weekend to an amazing lodge near the Pennsylvania Grand Canyons.  We wanted it to be a simple weekend with no agendas and I think we did a rather good job.  Camille got to chase after and find herself a big monarch butterfly.  She played with it for almost an hour before it decided to move on.  Here are some photos:


Then Camille took the pretty butterfly over to meet her twin brothers.  I was a little nervous about how rough they might be with it but our gentle Caleb was very interested in the butterfly:


Then she took it over to our rough houser Isaac.. that wasn't so pretty...LOL

Friday, August 6, 2010

Some progress made yesterday..

We went to Children's hospital in Pittsburgh yesterday to see the orthopedic surgeon about Calebs leg.  I cannot believe its been 6 weeks already!! It really did go fast, for me, I don't know about for Caleb, but I am relieved we are at the end part of the cast being on.  We were secretly hopeful that the cast may come off yesterday, but fairly certain that it would not.  We were told the night of the accident that typical children wear these casts between 6 and 8 weeks, children with Down Syndrome tend to heal a little slower so to expect 8 to 10 weeks for healing.  After the x-ray the doc said he was real close to having it come off but wanted to keep it on another two weeks.  BUT he said that he can have his left leg back and had the nurse come over and cut off the left leg part of the cast.  His poor leg was so dry.  I have to say that I was very pleased that there really was NO ODOR, maybe a tiny hint of urine from the cotton around his diaper area, but it made me feel really good that I had taken great care of his cast while it was on.. hmm hmm, its not off yet so I better watch what I say :)

So we get him home and he wants on the floor so badly.  He scoots around on the floor and looks like AHHHH Mom I can move, I CAN move!!! It was so cute.




The only thing that is more difficult for me now is the diapering.  Believe it or not when the full cast was on, I would tuck a size 3 diaper into the little opening and then put a size 6 diaper around his waist.  Now, there's no where to tuck a diaper on the left side and its falling off.  This morning when he woke up his diaper was entirely off.. guess I better figure out how to master this way of diapering fast or I will lose my excitement of having a clean smelling cast coming off in two weeks.  Thanks for looking and keeping him in your prayers for another two weeks or so.

Wednesday, August 4, 2010

Don't DIS my Ability

I just couldn't pass up the opportunity to buy these shirts for the boys.  I wore them on them for the Pittsburgh Down Syndrome Association 2011 calendar, but we decided not to have Calebs cast in the photo so they have close up shots and the shirts were not visible in the photos.  I plan on getting more photos of them in these adorable shirts, they were just hanging out watching tv on my bed and I had to grab my camera.  They are just so darned cute!!

Wordless Wednesday

Monday, August 2, 2010

Blog Help

I have this annoying box that says image or video has been deleted.  How do I get rid of it??  Geesh, its annoying :)

Your Baby CAN Read... Month FOUR

Well, better late than never.  I am trying to update my blog monthly on how the boys are doing with this program.  I am one week late today.  As some of you may know, we have dealt with ALOT the past 5 weeks with Caleb having a broken femur and being in a 1/2 body cast, so being one week late is pretty good.  With Caleb being in a SPICA cast and not mobile at this time, he's been watching alot of tv.  The boys usually watch way more tv than my other three children ever did, but Caleb is watching hours and hours of television everyday.  This being said, its good for him using this program because he loves watching the Your Baby CAN Read DVD's.  He claps when I put them in, so I know its not a chore to watch them, its enjoyment for him.  Isaac enjoys them very much too, but he's really into running around and playing with toys alot now too, so he may not sit and watch the whole video but he definitely knows his favorite parts as you will hear his little feet pitter patter across the house to come and listen when his favorite song being sung.

We still goto Speech Therapy and Occupational Therapy twice a week.  One boy in session for 1/2 hour the other boy in the waiting room for 1/2 hour doing flash cards or reading through the books.  As I mentioned last month, its still completely priceless to see the jaws dropping on the other people in the waiting areas watching the boys reading and signing the words and the pure excitement the twins show by being right.

I am not having the best luck with capturing this on video.  I cannot figure out how to get my video from my video recorded to my computer and the cell phone that we used this month seems to not have audio??  So I apologize for the quality of this video but even without sound you can see what words they are reading by their signs.  And if you don't know sign language.... well, trust me.. They ARE reading!!!  Our tally is about 50 words now that they are recognizing and reading.  Its so exciting and still very encouraging that these boys WILL be readers!!!

The first video is them watching Level 3 DVD

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The Second Video is them reading from the My First Words book which contains 30 words for growing minds, they can read every one of the words.  We are still working on signs with them for zebra, umbrella and bucket, but they recognize the words, just can't communicate them to us yet.  I am VERY happy about this!!
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I am still totally amazed at the response we've seen out of the boys with this program.  I am anticipating great things from both boys in the future!!!