Saturday, August 30, 2008

What a week and PPCD news

All I can say is WOW. We all made it through the new routine. I am fully rested after falling asleep the second I got in bed. Pj and Ant love their classes. I am into my classes. Our house is on its way to being done and Husker survived the opening of football. As for Ty Ty, well he is happily going to our PPCD... this is Preschool Program for Children with Disabilities through our local school district.



Ty Ty could have gone last year, but he needed to wait. It was a mother's intuition thing. I just did not feel right about the leader. This year it is completely different. The teacher and program are a breath of fresh air. It turned out I was right about the feeling from last year.



Ty Ty loved it. We will still work on some of his transitions and I am making him a new flip ring for the car. He is super confused about what we are doing when we leave the house. He will say "school", "see houses", "cades house" or "anthony go"aka where did anthony go. So I have taken pictures to put on a ring. Then I will put them in order so he knows what comes next. I will post a picture of what it is later...

In other news... Our Barnes and Noble opened. We are taking a Saturday trip to get ink,drop the recycling off and Ant wants to turn in his books read this summer for a free book.

Tuesday, August 26, 2008

You Tube to the rescue

There are those days that everything gets off without any effort. But, when I am in a pinch I have a secret weapon that can distract Ty Ty or any of the kids. ..... YOU TUBE.

I found this a year ago. I head to You Tube and I type in what they are interested in. Ty Ty's is trains. Everything trains...model, real, thomas, etc.. Then I look for the longest one and he will sit and I see how fast I can empty the dishwasher, cook, get dressed,etc. His Favorite is one called Train Movie. Its a German song and then it is brio trains rolling around to the tune. Its pretty funny that he likes this one called Yuma Yuma or this is another odd choice.

Test it out with the kids. I think its pretty safe as long as you monitor them. I have these two favorites for Ty Ty, but I have found lots of stuff for all of my crazies!!

Monday, August 25, 2008

12p13.1 Chromosone Deletion

Finally, this is Ty Ty's diagnosis. All of the waiting was worth it. Most people ask what this means... Well, its all the same things we are doing for Ty ty. Hopefully he will get ECHO soon from Tricare which can give him some more therapy. He will also have a EKG and ultrasound of his kidneys. This is just a check up.

They have put Ty Ty into a national database and this could either put us into contact with other patients that have this and will help in the study of this deletion. It is a rare deletion and therefore is not named. But, I have since found out there are other children with deletions or duplications on different genes that are similar in fashion. They seem to be developmentally delayed and also affect the brain/muscle connection. Thankfully the segment Ty Ty has is small because the bigger the deletion the more they are affected.

Speech Delays are the biggest concern, but really everyday Ty Ty makes progress. I think what happens is that he progresses in one area (occupational, behavioral, gross motor,speech, etc) but then not in the others. He really is making so much progress though.

We will continue to focus on what Ty Ty needs now and know that the future is just that - the future. I think that of all my kiddos though. One step, one day at a time. I am so relieved that I can do this now. I used to worry myself over silly future stuff before.

good quote to share-- What do you need to do, to go from good to great????

Post it where you can see it. Make baby steps and it can happen.

Wednesday, August 13, 2008

Mascara - A Moment of therapy

A Day with Ty Ty- How our house incorporates mommy duties with Ty Ty therapy.
Also, See why I love the color green.











What happens when I leave my makeup out.

Now watch he shows me how he undid the top--(physical therapy no no the way he is sitting)









He is W sitting so before I proceed we, "Fix Legs, Tyler."











Now look here is a moment of speech with a little ot. We are moving our mouth saying, Hi Tyler and look at your mouth. OT for the way he is opening my mascara. The precision it takes to make his mustache work.





Finally, a moment of cleaning for critical self help skills. But, use your core muscles while we wash and I take a pic while you are balancing on my knee ( also a workout for mom- no step stool required). Gosh, I think the mirror along with the floor will now need a cleaning.







I guess I won't leave my makeup out. But, hey that was worth all of this progress. More to come I am sure. Never a dull moment here.

Wednesday, August 06, 2008

Texture Aversion Ty Tys story - More then a just picky eater

Almost all parents face issues with feedings - whether breast, bottle, toddler,etc. But, what happens when they tell you its nothing, but a "texture aversion". Umm what??? What texture? You mean to tell me I have a picky eater? Ummm, No.


We found out that Ty- Ty -(aka tu-tu buns is retired= see note at end) had a texture aversion- this means- issues with texture, taste or combo of both plus difficulties with chewing and swallowing. But, it was more complex then just texture issues because Ty Ty was small and close to being off the chart. At 15 months Ty-Ty was 17pounds or so, but had not been gaining for sometime. I wanted to prevent them from putting in a g-tube (feeding tube) if we could.



We really needed Ty-Ty to eat and to move past this hurdle fast and quick (in the middle of preparing to move, learning to crawl,etc aka life). I tried it all and made it a priority to prevent failure to thrive. Nutrition is huge for kids during their developmental stages.



Eating for Ty-Ty took making sense of the sensory issues orally. We needed to help him connect the brain to mouth wires in his central nervous system. He really needed to figure this process out. Ty-Ty never told me he was hungry or wanted food. He was completely quiet to some degree. He was super EASY GOING. Too much so. But, the development in this area is crucial for more then speech, but all areas.






First thing first, the tools--I got the weirdest things from the Speech and OT - I got these items which I regret I have since donated, but they work. The first one was the teething vibrating tool by first steps.













Next we used this -



















Then we added vibrating tooth brushes, lollipops, whistles, every spoon made it seemed like, but take and toss was the best. Ty Ty had swallow studies to find how he swallowed and made sure he was not aspirating. So, make sure you check all of this out. He pooled his food so he had to be fed slightly tilted and I had to feed him. We use a high chair until he was 2.5 years. Getting him to eat his food without help will be a different post as this came a little later after we showed him food was fun.




Then I got very creative- Ty Ty only ate jar food that had no chunks, anything smooth and oatmeal/baby cereal. It was a little of a game for him at times when presenting new things. I had food all over the floor beneath him and on him. He would refuse and throw his head around. Really he could care less about eating.




So, I decided to try whip cream on Graham crackers since he liked whipped cream. Hm mm, he ate the whip cream and flung the cracker. I then found Graham cracker crumbs at Publix and began putting this with whip cream mixed. He liked it. Then I crushed anything I could find with whip cream. Pretty soon he tried eating crumbs with pudding, oatmeal,etc. Eventually he moved on to bigger and crunchier crumbs and did well. I would get through this without feeding tubes and swallow studies (which are annoying).




Next, I tried giving him little chunks of smooth things -- enter Ty Ty's obsession for strawberries, blueberries and every berry!! We took Ty Ty to the strawberry farm shortly after our move because Ant poked husker on accident and he had a eye injury. Since Husker needed rest I took everyone for a special outing to pick strawberries. It was all accidental, but it worked. Ty-Ty finally explored the fruits beyond applesauce. While I was paying for what we picked, he reached out of the stroller and tried to grab a strawberry. I then picked a baby one and put it into his mouth. He gummed it, but ended up eating it. Woo Hoo!!!

Then, the doors seemed to start opening. Whenever I found something that worked I worked it. Enter the Mac and Cheese. Its weird though Ty Ty had to have a certain brand and liked the Velveeta kind. From the time he took to some other texture then smooth he just blossomed. Broccoli in cheese, broccoli and mayo, corn,etc.




Finally, Ty Ty likes strong tasting food. Broccoli, carrots, Craw fish tails, pepperoni, anything salty and spicy. I picked this up and started trying to make sure what he ate was strong tasting and chunky. It really is all just trial and error and some tough love. You got to make them push. I pushed Ty-Ty to eat something other then pureed foods. But, in the end it is so he could get to where he is now.



He started eating what I say is easy foods- waffles, cereal, chicken nuggets,etc in Summer of last year. He loves sausage and hot dogs. I think too many nitrates are not healthy, so I buy the nitrate free kind.



I guess the thing is you have to find a balance and prioritize what matters most for your special needs kid or any child. Make a list of everything they like and eat. Then fix meals creatively with them one and try to introduce one thing at a time. They say it takes 11 times before a kid will actually try something.


In regards to eating fruits and veggies they can be canned, frozen or fresh. There are endless possibilities and many to choose from.



We were told to putt butter on everything to help Ty-ty, but I really prefer the healthier oils. I use olive oil with everything. I do not find it burns any faster and it tastes better. With butter- check out Olivio, Smart Choice and Brummels and Brown. Pj loves sugar and butter toast, but she uses what I call butter. Get smart- what your kiddo does not know won't hurt them ... change the packaging. When we tried the GFCF with Ty ty I had to use an old milk carton for the soy and rice milk.


A final note- you are the mother/caregiver and you are the one buying the food and overseeing their care . When there are suggestions - try it. If it works great if not keep trying. I think its frustrating because as a mom you are the one who will make sure it happens, so voice your concerns, but be willing to check the block as Husker says.




Diagnosis update- Still nothing. Ty-Ty as I type is alphabetizing my book shelf aka making a mess of my books. But, I look at the bright side--he's quiet and not hurting the books or throwing them. It makes me laugh that he used to be super easy and I worried... haha. Wow, now I get exausted at the amount of care he requires. Ahhh, how life can change, but only for the better :). Ty-ty is



PS- the jury has decided to call tu-tu buns Ty-ty. Thanks mom-mom and pop-pop seeing that soon he will be four.