When Push comes to Shove... I'm a Shovin!!

Several things have been going on with the twins lately.  Almost to many things for me to even process how to proceed.  They were seen in November by ENT to review a sleep study we had done. Both boys have been found to have a mild sleep apnea.  Isaac's sleep apnea is obstructive apnea due to very large tonsiles.  Caleb's apnea is central apnea.  We are to follow up with the sleep study doctor for a second opinion on getting their tonsils out now or holding off.  Also at that time both boys have had enough ear infections for the year to qualify for tubes.  The ENT (who I love!) decided that since Caleb was due to go under anesthesia for dental work, he would go ahead and coordinate tubes and teeth and give Caleb another set of ear tubes.  Isaac on the other hand, he felt the risk of putting him under outweighed him having another set of tubes right now.  Fast forward two months and the poor bugger has had fluid on his ears since early December.  He's had two major ear infections, been on antibiotics once, two shots of rocephin and one ER trip.

Part 2.  We visited the eye doctor in early December.  At that time we were surprised to hear that the eye doctor has seen some optic nerve damage on both boys right eyes.  The twins have been experiencing some new self injurious behaviours lately.  They are poking their eyeballs... literally fingers in eye sockets kinda eye poking.  The eye doctor said that it was important that we get glasses back on the boys and perhaps that would prevent them from poking as much.  Their perscription had changed so much from our last appointment and she felt that was why they were throwing their glasses off again after finally getting them to keep them on all the time.  She was right!! We have had glasses again for about three weeks and we are gradually building up the boys wearing them more and more and the eye poking has pretty much stopped.  BEFORE the eye poking another sensory issue we have had with both boys is head banging.  The kind of head banging that would send a mom running to see if their child knocked themselves out cold from the hit.  Isaac will run from a 6 foot distance directly into the wall forehead first and knock himself back on his can.  Rarely does he cry.  Its like he's getting something out of it other than pain??  The eye doctor listened to this and also was concerned that maybe the headbanging could have resulted in the optic nerve damage so we are set for a sedated MRI to look at their brain and their eyes.  It was originally scheduled for next week, January 20th, but the scheduler overlooked something and double booked the boys.  The MRI has now been rescheduled for February 4th.

When I had the MRI department on the phone I had asked them if since Isaac was being sedated for the MRI is there anyway an ENT could come and put tubes in his ears.  They said that the MRI room was not a sterile room and that would not be possible.  So ok, I accepted that and figured Oh Well at least I TRIED.


Now this week Isaac has been head banging quadruple time.. No exaggeration.. if I were to count how many times a day right now we would be over 100.  Ever piece of furniture he walks past, dining room chairs, rocking chair, computer desk.. he bangs his head off of it.  When frustration sets in he runs for the nearest hard thing to ram his head into.. the kitchen cabinets, the wall, the bedroom door... and as a result this week he has a bruise on his forehead.  Rarely does he do this so much that it creates a bruise.  Its a small bruise, but a bruise no less.  After speaking to his Autism behavioural specialist today and brainstorming, I think that its become a running pattern when his ears are bothering him.  Last Saturday we had him to the ER and we were told that he has a double ear infection.  He got a shot of antibiotics and we were sent on our way.  I was supposed to go back to pediatrician this week to have them checked again BUT they had a stomach virus going on and I was not about to goto the doctors office and share our germs to get any more.  He is due to go back next week for a re-check from the last infection that did not clear up...so I'm holding off for now.

Today I got it in my mind that I think Isaac's headbanging is to the point of causing him harm.  I think that its time for another set of tubes and I was going to figure out how to get it done.  I called the ENT.  I explained the situation, I explained that he is due to come to Children's for an MRI and I was wondering if they could sedate him in the OR, put in the tubes and then wheel him down to MRI department to do what they need to do there.  The doctor said that would be fine with him as long as we can coordinate schedules with MRI department.  WOW!!  Glad I thought of it :)

So I am waiting for the MRI coordinator to call me back, but its looking good that we can get this done.  I love when I feel like I am truly advocating for my children in a positive way.  So as it goes right now....  Caleb will go for dental work and ear tubes on February 1st, then go again on February 4th for his MRI.  Isaac will hopefully be getting tubes and then his MRI on the 4th right after his brother.  Two trips to Pittsburgh in four days and I sure hope this solves some questions we have about the boys, both with the head banging and the optic nerve damage.

For those that don't know that my husband is a partner at a CPA firm, this is a hard time for us as his work schedule is so very busy.  He is so wonderful about putting the boys and all their Pittsburgh trips first and he does so without complaining even though I think that his office may frown upon him missing work during prime season. (Doesn't happen often)   Let's hope these two trips will be our last until April, but I'm thinking... follow up appointments may be required for both of them.  Hoping for the best outcome in both situations :)

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!!!!

Sensory Processing Disorder

Today I attended a training titled Sensory Integration: Tools, Resources and Real World Solutions for Life with Challenging Kids.  I went there hoping to come home with all the answers to my 4 year old identical twin boys (who happen to have PDD Autism and Down Syndrome) actions that we just can't quite figure out, and I think that I may have accomplished that.  Not with a solid solution, but with a different kind of thinking that may accommodate their sensory needs.  I am one of those parents who try to STOP the actions that I don't like and find inappropriate to do out in the community.  One thing my boys do all day long is swing their arm with a closed fist up and hit their head... several times a day.  When they are over stimulated, when they are upset, when they are engaged in something and having fun, sometimes when they are watching tv, basically just all the time.  As a matter of fact, they communicate by signing to us and I can't tell you how many times people have asked us what they are signing when they pound their head like that.  "We've come up with the reply that they think your a weirdo...LOL"

Instead of taking away something that they need (sensory input to their head), I'm going to look for a new more appropriate way to give it to them.  I am considering a weighted ball cap.  I found one in a magazine they gave to us to bring home with us.  I often wondered if they made these but never really researched it.   Also, they are head bangers, this may help with that as well.  Apparently, they are not understanding where their body fits in space.  

Another thing about Caleb that I'm trying to understand is his sock obsession.  He swings them, they chews on them, he hoards them and hides them all over the house.  He will only chew on the top end, he will only hold the top end and rub that end on his face... So a solution they gave to me today was to cut that end off of a sock and attach it to a necklace like and allow him to carry this with him for comfort.  Put it in his pocket or backpack and allow him to have it as a reward to stay on task or as a motivator.

There are several types of Sensory Processing Disorder (SPD).  There is Sensory Modulation Disorder (SMD), Sensory Based Motor Disorder (SBMD) and Sensory Discrimination Disorder (SDD).  The one I found the most fascinating was SMD.

Three types of SMD:

Sensory Under Responsive Kids:

• Low Muscle tone
• Lacks appropriated demonstration  of pain or temperature
• Difficult to motivate or engage in a task
• Hard to sustain attention
• Prefers sedentary activities such as watching TV
• Difficulty siting in a chair, may lean forward for support
• May eat too much because he doesn't register hunger

Sensory Over Responsive Kids:

• Irriability
• Aggression
• Shut Down
• Inability to sit still
• Hand flapping
• Inability to calm self
• Changes in eating or sleeping

Sensory Seeking Kids:

• Always making a mess
• Can't keep hands to self
• Likes rough housing, crashing, unable to stop talking
• May have TV, ipod or radio very loud
• Prefers strong flavors of foods - hot, spicy, sour
• May lick or chew on non-food items
• Can't stop moving or fideting
• Bumps into things
• Enjoys playing with things or touching textured objects
• Jump, Jump, Jump
• Very difficult to engage in activities such as church, movies, and the like

Honestly, my boys have lots of characteristics from each of these types of SMD.

The above information came from our power point hands outs.  Our presenters were nervous as it was their first attempt at this training, but I have invited them to come and talk at Camp Friendship in August.   I will be sure to advertise it locally here when they decide to come.  I would encourage anyone with a child on the Autism Spectrum, ADHD, ADD, Down Syndrome and/or Sensory Issues to attend.  It was worth the 6 hours we were there!!

Annual Down Syndrome Clinic Visit

Today we traveled to Pittsburgh to take the boys to the Down Syndrome Clinic.  I always feel so encouraged and ready for action after leaving this place.  Talking to a doctor (or our case this time a wonderful Nurse Practitioner) who's main job is dealing with children with Down Syndrome on a daily basis give us more confidence that we are doing everything right and giving the boys everything we can to hopefully make them as independent as they are capable of being when they are adults.

We had GOOD News today and BAD News today.  I'll start with the good. 

We were told that their receptive language is very good, to the point of high functioning good.  Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful.  The fact that they know and use approximately 200 signs was a huge bonus for them.  Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy.  We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now.  So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP.  Overall, we got the thumbs up for how well the boys are doing..  My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.

Now the Bad News :(

When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation.  Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too.  Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids.  If they are not aspirating we could stop thickening their milk everyday.  This would be HUGE!!!  We are also to consult with a podiatrist regarding one of Calebs toenails.  It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting??  So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again...  And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.

So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything.  One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.

I am encouraged and proud of the boys at today's report of how well they are doing.  Its been alot of work for them and for us, but worth every minute of it.  Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)

Long Overdo - Hairdo

So we after having to cancel two hair appointments because of one or another of the twins being sick over the past several weeks, we finally got around to getting their haircut before Easter.

I myself, LOVE the long curlies.  I love them!!!  But they get mangled and tangled and they are not happy to have their hair brushed so many days we just went without and it wasn't pretty..  I have some family members (uhem... Megan) who teases me for not getting the boys hair cut more often.  Its not an easy process, I love the long hair look on them, and I don't just pick them up and take them to a barber shop.. I have a wonderful friend come right to my home and do it.  Not only do I have to coordinate our busy schedules, but I also like to have TSS staff on hand so we can hold hands down, sing and dance, hold head still when needed, and help in any way to get it done as quickly as possible.  So I have to hire a STAFF of people to get it done... LOL

I thought I would photograph a little more this time because it is such a fun time :)

No tears... Cracked Lips... Yep, We're Dehydrated!!

So my previous post was calling out for advice on how to get more liquids into a kid that will drink NO OTHER liquids but rice milk. And when his tummy was sick, even rice milk was not going in.

We ended up in the hospital on Thursday morning. No tears, no saliva and lost 1/2 a pound in one day.. My poor bugger was so sick. His little bottom was so sore from constantly going to the bathroom. I knew immediately when he messed his diaper again because he would scream from pain. Its always so heart wrenching when your child is sick.

He has been in for two days now and I am expected discharge today.  He's got his spunk back, he's eating and drinking and quite frankly I AM TIRED OF WATCHING BLUE'S CLUES!!!   There are about 10 channels on the tv here with PBS being the most kid friendly channel, so we have been watching Blue's Clues videos non-stop for three days...UGH   A mama can only take so much of this stuff when I'm confined the the same room and have no other choice to to watch this over, and over and over and over... At least at home I can go about my business and clean or watch a different TV..  I'm just glad that Caleb is content to sit and  watch something repeatedly and still have a gigantic smile on his face with each show.  That is mostly what I watch and enjoy!!

I am looking forward to seeing the other kids today.  This was one of our shortest hospital stays on record but its during tax season when daddy has to work extra long hours and now mommy is away at the hospital with Caleb, we had four kids staying at three different houses.  (Thanks Aunt Cathy, Aunt Megan, Grandma, and no today Nana!!)

As always, its been a learning experience for me.  I got to sit and talk with a dietitian yesterday about his lack of desire to drink ANYTHING but rice milk.  She said that everything I am doing as far as "trying" to introduce different things on occasion is what I'm supposed to do, she gave me some extra ideas to try..  She also said that since I thicken their liquids with Thick It I actually need to get even more fluids in them because the Thick It sucks up some on the fluid converts it to a starch (or something like to that affect).  So I will be more aware of how much they are drinking now.  And we both agreed that there are sensory issues that we need to deal with as well with a speech therapist.

Also, I got a recipe to make my own rice milk.  My husband told me before that I could do this but I didn't think I had the time or patience to add another TO DO to my list, but I have been informed that its very easy and it would save us a ton of money.  We spend an average of $50 a month just on rice milk.  I guess I'll fold and give it a try.

Thanks for all the thoughts and prayers!!  Again, God has been so good to us with the care we've received and Caleb being on his best behavior (despite immediately YELLING at all medical staff that enters the room and is about to touch him..lol)

Help needed with getting Liquids in my boys...

Ok this is a LONG overdue post. I have been trying different things and asking several people for advice, but to no avail. My boys both have issues with drinking. I don't know if its a sensory thing, if its a flavor thing, or if its just them being stubborn (I don't think its stubbornness).

Ever since they were about 8 months old we have been thickening their liquids due to the fact that they both aspirate thin liquids. We continue to do this still today and they are 4 1/2 years old.

My problem is that today we were at the doctors office, Caleb is close to being dehydrated. We were given another day to push more liquids into him and we were to stay away from milk products. He has a stomach virus going on and its causing him severe diarrhea and occasional vomiting.

This is the conversation between me and doc today:

Doc: Go ahead and give him Pedilyte
Me: he won't drink it.
Doc: Ok then Gatorade will work
Me: he won't drink it
Doc: Ok, well then water down some soda
Me: he won't drink that either
Doc: Humm, well then jello or Popsicle
Me: He won't do either of them either..

So I have no other choice but to continue with the rice milk, but this is not the first time this has happened to us. Does anyone have any advice on how to get them to drink other things? We have tried putting juice in their milk, just to flavor it and see what they would do.. Throw their cup is what they did.

We've tried a small amounts of soda on a spoon before and NO! I don't think they like the coldness of the Popsicle and jello they they spit it right out...

I'm outta things to try. We've only really worked with the speech therapist about two years ago and nothing worked then. Who do we ask about this?? I'm at a loss????