Valentine's Week!

Will has been getting goodies from family and friends all week!  Now that I don't work in the cut flower world, I kinda like Valentine's day and week too:)  I had a teacher/therapist conference this morning with all of Will's 'team'.  They are happy he is making progress in areas of therapy but also in social/interpersonal ways in the classroom.  I believe Will has a hard time interacting because of his inability to communicate.  He has been more willing to join in play with others by bringing a toy to play with and has been singing and dancing more each day during music time...as long as no one is looking:)  His teachers know him so well...they told me that if he is dancing and they look at him or comment about it, he says 'no' and sits down.  Oh Will!?!  My stubborn boy:)  His therapists all said that he has been more willing to work with them lately too, which with Will is half the battle!

 

 

Will is on a one month break from his thyroid meds to see if he still needs them.  At age 3, doctors often try this to see if the hypothyroidism was a temporary thing that the child grew out of and then retest the blood in a month to see if his TSH and T4 numbers are where they should be.  Now that we have figured out how to get the medicine in the kid, it is no big deal to give it to him each day, but I guess if I didn't have to that would be one less thing for me to worry about.  So we will wait and see.

He also went to the ENT recently to find out one of his tubes is dislodged.  Another wait and see approach.  His 3 year check went well too.  Growing slowly, but growing still and otherwise healthy.  His pediatrician is his (and my) favorite doc as she entertains all of my laundry list of questions and rarely does anything invasive.  I try to limit my Google searches and check with her instead because otherwise I would have Will doing all kinds of crazy stuff:)   I also think she checks in on Will's blog, so I am hoping I got some 'points' for that one! 

I am getting excited about some new possiblities for speech and other therapies, including music therapy.  I hope to try some new things to get this kid motivated to communicate.

 

Will got a package from Grandpa Ron and Grandma Susan with popcorn and other goodies.  Luckily he shared with Lillian (and mom and dad!).

 

 

Opening (or spectating) the box of crafts and candy from Gaga and Papa.

 

He did NOT want me to take his picture with his Valentines for his class.

 

 

Circle time at school. Everyday they sing 'Will came to school today, we're so glad lets shout hooray!' and the kids get a turn to hug the duck. He loves to take his turn:)

 

Snack time with Valentine's goodies and CHD treats!  This week also celebrates Congenital Heart Defect awareness.  Many of Will's Buddies with Down syndrome have CHD as do other friends at school.

 

Playing and sharing valentines today with friends.

 

 

Circles and Seesaws

Will's OT skills have been picking up!  He absolutely loves his private OT.  He never hesitates to go 'play' with her and always comes out bouncing and jumping with excitement!  Usually with a sticker an a sucker in hand:)  She has seen a lot of progress in his drawing skills.  He has been drawing more circles lately when he scribbles, which is a key stage in development of hand skills.  He loves to play with her bug game where he uses salad tong type scoops to grab bugs.  He also loves her pirate ship game that involves putting swords into these slots.  She also works on crawling, climbing, balance  and timing exercises on the swing.  His scissors skills are emerging, but I can wait on that one as we have had lots of friends that have given themselves unwanted haircuts lately.
He is also still very ambidextrous at the this point.  Prefers right slightly, but still uses left as you can see in the top picture.  According to a blog I follow that did an informal survey, 'While 13% of the general population is left-handed, our (non-scientific) poll showed that 41% of people with Ds are left-handed and 10% are ambidextrous'.  I learn new facts about Ds everyday!

 

He is so vocal in his bed every morning.  He sits in there and babbles to himself while he waits on one of us to come get him.  I try to let him go as long as possible because the babbling is so good, and also to squeeze in a few more moments of sleep or me time!

 

Will and Jonas have been playing so nicely together lately.  I know they will be good buddies for life.  Here he is showing Will how to use the iPad:)

 

Sharing the chair while watching cartoons, and with cheesy smiles!

 

Jonas is going to be 5 in a few weeks and he is becoming such a good helper and playmate.  He can be a stinker at times but can also be patient and helpful moments later.  The other day at the indoor playground my sister and I got a huge laugh at him trying to help Will get on to the seesaw.  He wanted to play on the seesaw with Will but could not figure out how to get Will up there.  He tugged and pulled and lifted Will as much as he could, but when that didn't work, he went to the other end of the seesaw and got on his hands and knees and wedged his back under the seesaw to try to lower it on Will's end.  It is hard to picture maybe, but it was unbelievably sweet and heartwarming!

Will's iPad

Will recieved a very generous gift.  He was the recipient of a grant from a local foundation that paid for an iPad for Will.  Complete with case.  We are humbled.

Here is Jim from the MJB Foundation presenting Will with his iPad.  What an amazing foundation and a giving person.  To read more about the foundation go to www.mjbfoundation.org .

 

So far Will has been doing well with the iPad.  We have several apps that are the same ones used by his speech pathologist at school (pictured here holding Lillian).  Those are great for consistency.  We also have several that we have found or were recommended to us by friends for both speech therapy and occupational therapy.  We also have some fun ones too!  We had to 'hide' the Elmo one, because although it is good for learning letters and good for finger isolation, he only wants to play that!  Each night we try to take a half of an hour to sit and work on it.  Then throughout the day we play and little here and there. He has been doing well with making new sounds and words with several of the speech apps. I have a good video of him saying 'boy', but Blogger is having issues with uploading videos.  I will try again later.

 

Good news health wise...Will has been eating better and is back up to 29lbs.  He has also been drinking Pediasure juice which is packed with nutrients and calories so I think that is helping too.  It tastes aweful, but he doesn't seem to mind:)  Ironic right! 
Which leads me to a whole big fat weighted and heavily debated topic in the Ds world.  Since I think mostly family and friends check in on Will thru this blog and not others in the Ds community, I thought I would give a brief description of what some call vitamin therapy, nutritional intervention or 'the protocol'.  There are several drugs and supplements that many parents are giving their littles with Ds to improve or prevent what they feel are the issues with cognition, which are mostly memory, focus and the onset of Alzheimer's symptoms.  It involves drugs like Prozac, Focalin (ADHD drug), Gingko, B vitamins and others.  It is an interesting debate and one that has divided many in the community.  The believers feel pretty strongly that their kiddos are doing better on them and the doubters don't feel their is enough science based evidence to support the risk associated with putting a small child on drugs that weren't made for them.  It is important to say that I have discussed this topic with ALL of Will's docs and the resounding response is 'no'.  Most professionals feel there is not enough evidence to support the benefits and more importantly there are not enough tests to take the risk.  Clearly there are some docs out their that support the protocol, because these parents are getting their scripts written by someone, but I think they are the few.  Will is not on anything other than a typical multivitamin and some DHA for good measure.  I trust Will's doctors and hope I am doing the best for Will always.  I could go on and on about the debate but I will stop here.  I mostly mentioned it because I think it is an interesting debate and one that I have spent hours researching. 

Otherwise Will has been having several good days at school.  The teachers have said that he has been more social and participating more.  He had some bad days while he was sick and didn't want to do much:(  We have been speech therapist shopping again.  I am shaking my head as I write this.  Hopefully we find a better fit soon.  In the mean time I am reading 'It Takes Two to Talk' which is a program developed by the Hanen organization.  It is a program for preschool aged children with speech delays, but is really geared more at the parents and how we communicate with our children.  Basically it teaches you ways to talk to and react to your child's behaviors and attempts at communication.  I have heard a lot of the principles before from various therapists and teachers, but reading the book will hlep to reinforce and remind me of those.
Will has also been taking a gym class each week for the winter.  He started out scared and overwhelmed the first class, but the last two classes have been great.  He is excited and willing to participate!  I am an active participant as well (unfortunately) so I have no pictures.  I will work on that:)

Will's new favorite treat...popcorn!  I have been making it on the stove a lot lately and he can't get enough!  Just like Papa used to make us for IU games:)

Welcome 2013!



Happy New Year to all!  We finished off 2012 with lots of celebration and some struggles, but are happy to invite 2013 and all it will bring!  We had a nice Christmas despite all being sick.  We have enjoyed some time off together, some of which were sick days from work and school.  We rang in the new year all comfy at home.

2012 brought us our first new house and all the fun and firsts that go along with that.  We saw lots of new firsts with Will too.  We had some fun family times and a couple of exciting trips too.  We hope 2013 is filled with as many good times and firsts to celebrate!

 

Recently my sister and I have been talking about the 'shiny' pictures.  How Christmas cards and social media make you feel like everyone else has it so easy and perfect, even though we all know better.  And whether we know better or not, we compare our family’s imperfect insides to other families’ shiny outsides.  Here's my shiny picture.  Even though they aren't all my kids, they each make my life shiny and happy.  My life is far from perfect, but most days these kids make it feel that way.

 

 

Will has been challenging me more and more with things he won't do and won't try.  His stubborness can be exhausting.  He continues to refuse food and, yes, I have tried EVERYTHING.  He gets grumpy and frustrated when I try to work with him on shapes, colors, letters.  He can not express himself other than to say 'no', so I hear it constantly.  Sometimes its cute...mostly it is frustrating.  In my positive column though, he did finally have fun with the shaving cream in the tub.  Its a small step, but I need to focus on the positive:)  He didn't touch it much, but he used his shovel to move it around.  So although it didn't do much for sensory work, he did get a wrist work out and fine motor skill practice.

 

 

And we were sick about two weeks before Christmas.  All of us.  High fevers, sore throats, congestion and coughing like we have never coughed before.  I had pneumonia amid other issues and it took us all about until Christmas to feel better.  Poor Will was miserable.  Kiddos with Ds get the upper respiratory stuff pretty bad when they get sick because all their anatomy is small, including airways.  He has lost 3 pounds in the past month either from being sick or being stubborn.  He slept a lot and layed around for a week, but managed to stay mostly happy.  This is one day during our quarantine.

 

 

We did make it to Wildlights at the zoo!

 

Helping decorate cookies at Grandma Sandy's house!

 

Wrestling with his cousins at Crandall Christmas:)

 

Christmas eve at Gaga and Papa's house.  Good food and good company!

 

Uncle Ricky got me solo cups for Christmas (among other things).  I like them a lot but they aren't much fun without Uncle Ricky here to build the tower.

 

Christmas round two at Grandma Sandy and Grandpa Jim's house.  Lots of presents!

 

 

When we finally made it home, Santa had stopped by our house too!  He left Will a chair, jeep, microphone, books and puzzles.  Elmo wins the top prize thanks to Aunt Kelly!  He also loves his car garage from the Browns and has already spent hours making the cars go up and down.  He is thankful for ALL his presents and got spoiled a little bit:)

 

So we have high hopes for 2013 and hope we are not disappointed.  We wish all our family and friends the same good things. 

Will is 3 years old and I have no idea where the time went!  It is cliche, but it feels like yesterday that we met this little guy that would turn our world up side down in all kinds of ways.  I can't believe how far we have come.  I mean both him and me.  What a crazy, fun, scary, frustrating and fulfilling whirlwind of 3 years it has been!

 

 

Will had a fun birthday weekend filled with family, goodies and lots of presents!  He really liked the cupcakes and ice cream this year but didn't want to pick it up:)

We went to the nature center today and took a nice hike in the sunshine:)  Then home for more cupcakes since I don't want to eat them all and he needs the calories!

 

A lot has happened since I posted last that I can hardly keep it all straight!  So where are we?!  Really where are we, I sometimes forget I have been so busy with all of this 3 year old transition stuff!  Will is now the responsibility of the Upper Arlington School disctrict as they will oversee his services until he graduates High School.  We will no longer work with the state under Help Me Grow but have a service coordinator from Franklin County that helps us along the way.  Will is the proud new owner of an official IEP (individualized education plan) which is his legal document that spells out all of his goals for everyone involved in his services.  It was a lengthy process.  Will has had several evaluations to determine which services he is eligible for and where he is at in all the major areas of development, which taught me even more about this little guy.  He will stay at the Childhood League Center this year for preschool, as is our choice, and we will look again at UA's special needs preschool this spring to see if it has improved under the new direction.  Will has been working hard at school with all his therapists and teachers and although sometimes they make him mad in the process, they are all getting some progress from him.  He has been working well with his speech therapist at school and enjoys her games on the iPad.  The occupational therapist has been getting him to do some open cup drinking and getting him to sit on the potty.  His physical threrapist is working on jumping, balance and climbing.  The teachers adapted the room for Will so that the toy cars are all up front now, so that Will does not retreat to the back away from the group to play.  They are forcfully inviting Will to participate in activities that he would be happy to observe.  His second private speech therapist this year is changing positions so we are AGAIN searching for a new therapist in leu of being put on a waiting list for another Nationwide Children's therapist.  He had been working really well with her.  On a positive note, he is working very well with his new private occupational therapist and doing lots of good things with hand skills like coloring, beading and throwing.  He is still challenging me everyday with his picky eating and stubborness but that is truly karma!

I love every ounce of this kid though.  He is worth all of it!!!

 

 

Look what else Lillian taught me to do...

Will re-started private speech therapy last week.  He was able to squeeze in with his old therapist which makes the intro period much easier!  She is happy with how much he is approximating sounds while signing...'ba' for ball, 'mo' for more, 't' for train.  I am happy too that he is making small progress in speech, it just never seems like it amounts to much.  He still doesn't use any words unless prompted, so communication is getting to be an even bigger challenge.  Tonight at Chick-Fila, we were playing in the play space when a little girl asked me how old he was and does he talk?  I said no, not yet, he just jibber jabbers.  She goes, oh, well my brother is two and he talks.  Cute kid.  Sigh.  But on a positive note, Will has conquered the play gym there!  Until recently he needed cousin Ava to help him up the big steps to get to the slide, and would usually have to be saved when he got scared up on top.  Tonight he climbed and played all by himself, except for our little friend and her brother, and was so happy and proud!  He wore himself out going up and down!
He wasn't into carving the pumpkin and touching the goop this year:(  He did like coloring on the pumpkin though!

Ron is off to Maryland to run another marathon so Will and I went to the zoo.  This monkey did not like me taking his picture!