KKI Week 4 and Beyond!

Where to begin...
Connor's 4th week of constraint therapy was learning to do bimanual stuff.  Connor was quite proficient at a lot of this before KKI so I was wondering what to expect.  Excited for him and yet worried that all the great things he had learned to do with righty would fall to the backburner. 

But this was great!  I got to see him do all these great things with 2 hands!  This is a copy of a post I put on Facebook on October 8th.

Tomorrow is Connor's last day of CIMT at Kennedy Krieger. He has amazed me! Just a few of the new things I notice him doing without the cast: Holding on to the railing with his affected hand, more two handed play, able to hold onto my hand with his right and fully extended, two handed play in the car, holding his sippy cup with two hands or able to hold it in just his affected hand when necessary, able to actually use a snack trap with the lid on! Connor is 22 months old.

To celebrate Connor's freedom from the cast. The boys and I went to Port Discovery.  Thomas and Connor had a wonderful time at their favorite playplace.

Connor showed off his climbing skills.

 Thomas got to play Train Conductor.

 Have no idea what these things are for but the boys loved them.

 Went for a ride on an insect.

 Thomas allowed Connor to take the drivers seat and pretend chauffeur him around in the car.

 Then we went back to KKI for more bimanual therapy.  Connor got to make pudding with a little friend of his also doing CIMT.  The two of them had a great time collecting ingredients, strutting their stuff down the halls, and mixing up a batch for a very messy snack time. Doesn't sound like therapy, does it.  Notice he is using both hands during all of this. 

 I have been keeping in touch with Connor's new friend and his mom.  They were 2 weeks behind us.  It is nice being able to talk to other mom's that GET IT.  I have my own support group made up of families in the area who have kids who had strokes.  We love getting together to watch and celebrate all the things our little miracles babies are doing. 

CIMT Week 3

We have been busy. I fully intended to keep this up to date as the therapy was going on. 

We started week 3 by going to PA to visit the Grandparents and hang out with the extended family at a reunion.  The kids had a blast!  They spent the whole day playing with the gravel and jumping in puddles. 

We religiously did Connor's homework.  We got a new homework sheet  every weekend to build on the skills he was working on during the week.  

The boys had a dance party.  This was terrific to see because I have a video a few weeks before CIMT started where Connor was not using his right hand for any of the keyboard play.

And the biggest hit of the whole weekend was that Grammy and Pappy surprised the boys with powerwheels.  Thomas promptly drove over the flowers and reversed and did it a few times.  Connor was not happy when Thomas stopped short and made him bump his head. We then though better of this arrangement and fixed Connor up with a helmet.  We should have thought of that first.

Connor had another successful week of therapy.  He ended the week being able to have a more relaxed arm.  Eating with a utensil was going better.  Actually through it all Connor refused to resort to eating all food with his fingers.  He was so determined to use his spoon and fork that despite not being able to get as much food to his mouth he stuck with it.  He is doing really well. 

Connor also had a PT visit at Children's and our therapist said he was doing the best she had ever seen him. And he is always doing pretty well so that says something.  She did warn us though that his right foot was not completely stroking the floor with the heal so that we needed to be extra vigilant with the stretching otherwise he would need a lift in his shoe and in the future he may need surgery.  So despite the whining I have been stretching this kid out even more so then before. 

Week 2 of CIMT

Connor is doing AMAZING!  I knew he would I just didn't know what results we would see.  Connor has a lot of function in his right arm and hand to begin with.  We have been working so hard for months with the serial casting and OT and PT and everything else.  I was always afraid to keep the cast on him for more than an hour and I always felt like I had to constantly entertain him while he was in the cast.  Connor is doing so great he just goes off and plays by himself with hardly any help.  I caught him playing with the shape sorter bucket this morning.  He was able to get all the shapes into the holes with no problem.  He takes the shapes out of a Melissa and Doug clock and puts them in a Little Tikes Mailbox I put up on the train table to make him have to reach for it.  He is constantly picking toys up and putting them in buckets containers.  He pick up cones and puts them all over the house. He is on the floor playing with Thomas doing trains. 

He has gained strength in his hand as well. He carries buckets of magnet letters from one room to another.  We have these accordion plastic tubes and him and Thomas play firehouse with them.  Connor is able to hold on pretty well.  And all the things we have been doing for strength he has gotten even better with.  The pegs in the play dough, pulling Velcro fruit off the Velcro catch mitts. He is an ace! 

Then there is the spoon and his pincer grasp.  Last night we went to dinner with friends and he was grabbing quasadillas out of our friends hand pretty high up with just his two fingers.  Totally correct position too.  Goldfish and other small items, no problem.  As for the utensils, there is still work to be done but he is a determined little guy.

This is Connor and his friend sharing some dinner.

We tried out that pincer grasp with Raspberry picking this weekend.  It would have been a great activity if not for the thorns.  Oh well. T.J. and I picked and the kids would run bucket so of the fruit back and forth between me and T.J. to fill up our buckets.  Connor was eating them by picking them up with pinchy from our palms.  What a mess he was by the end.  Thomas was much more excited about the apple picking.

CIMT ups and downs

Friday Connor got his cast put on.  He fusses a bit while we were putting it on but then got right down to the business of playing.  Judy my MIL went with (Thank God).  The two of us got to watch Connor play peekaboo, play trucks, and play with balls. He did great!  But he has been really good about using his right hand to pick up items to begin with.

Before the cast went on they had me tell them a list of things I would like for Connor to get out of the program and them to rank them.  So some of my goals for Connor are:
 to be able to use a pincer grasp to pick up small items.

To extend his arm above his head and grab items with a pincer grasp
to walk with his elbow straight
To turn handles (doorknobs)
Be able to extend his arms to wash hands at the sink
Gain strength in his right hand.

I then had to rate how good he was at each of these right now and how happy I am with how he is doing them.  Pretty arbitrary but they will compare these scores with ones taken at the end.

I was told it would be most beneficial to keep the cast on 24/7 including bed time.  But Haley (the OT)  said she was concerned that part of the cast might be rubbing. She suggested taking it off on Saturday before Connor's Swim class to make sure it was not causing any irritation.

Well it was causing a rash to develop due to the rubbing at the crease of his arm.  So I left it off after swim class and as soon as we got home put some Neosporin on it and after his nap we put his old cast on instead.  This weekend he has just been wearing the old cast (except bedtime). We are giving his arm time to heal before Monday's session.  I guess I could have just left it off completely. But I figured we are in this for the duration.

Though Connor has been doing great using his right arm and hand to play and o just about everything this weekend has been crazy.  T.J. and I were so glad Tom and Judy were staying with us.  Connor refused to nap with the cast on.  This led to one unhappy little man for the first day of his swim therapy at the Gudelsky Swim Center.  (awesome program by the way, held at the JCC in Rockville).

Here is Connor and Grammy chasing geese on the way into the swim class.

 In addition to an unhappy swimmer, an exhausted mommy.  He also has not been a happy eater.  He usually is wolfing down food and having to use his right hand has cramped his style.  He usually doesn't use it unless he wants to hold something in each hand while eating.  I have noticed that he is working really hard to use utensils with his right.  And I imagine just grabbing the food and shoving it in his mouth would be a lot easier so Go Connor Go!

At bath time tonight we noticed his left arm was fully healed so hopefully they will fix the other cast and we can go back to using it.  It is waterproof and the old one we are using is not.

I will keep everyone posted.

Schools Out and Time to Play

CIMT at KKI tomorrow!

Tomorrow starts CIMT at KKI.   LOL. Lots of new acronyms.  Feeling anxious.  Connor has been doing so great using both hands to do stuff I don't want to interfere with that, but at the same time having a permanent cast will make Connor figure out how to do lots more with his right hand.  As great as he is doing he still eats his food with primarily one hand.  He was eating a cob or corn with just his left and couldn't seem to get how to do it with two.  Or even using utensils with his right, that he does not do...yet!  It will be an interesting few months. 

In the meantime, Thomas will be escorted to his first day of Preschool in the 3's program by Grammy and Pappy.  They have happily agreed to stay with us the week to help get us in a groove with our new schedules.  They have strict orders to take pictures of Thomas while we video Connor at his intake appointment in Baltimore.

End of Summer

Summer is officially over and it seems though both my guys have blossomed in the last couple months.  Thomas is so inquisitive and ever helpful.  He has been asking nonstop questions, so much so that now Connor even pipes in with "Why" when we say something.  We have added to Thomas' "chores" just to keep him occupied.  While Connor naps he helps with the laundry, the dishes, cleaning the glass doors and the chalkboard.  He even tests out my therapy ideas for Connor.

 Connor has bloomed as well.  He is using both hands to play and figure stuff out. The latest is the buckle on the highchair.  he sits there for 20 minutes or so just clicking them together and fussing for me to unclick them so he can do it again and again.  Two hands...Yay.  He loves to open doors and visit daddy at work.  So we have had to start locking T.J. into his office to keep Connor from ransacking it at every turn.  Lately I have even see him grab the front door knob and pull or push the door open using his right.  This is so amazing to me because not only does he have to get his hand open enough to grab the knob but that is an awesome stretch for his arm and shoulder.  I think back o before the first round of botox and how hard it was for him to raise his arm above his shoulder and now he can do this maneuver. 

Can't Forget. BIG NEWS!!!
Connor was scheduled to have Botox again on 7/31/13. Well we had out appointment with Dr. Evans and she thought that he was doing so well that at this time he does not need it.  We are going to see what the results of the CIMT are and go back in October to discuss if we will need it then.

So we have been having a blast this summer. We have been bringing the kids on lots of field trips.  We have gone to the aquarium, the Children's Museum at National Harbor, the Trolley Museum, the Building Museum, the library, the pool, Port Discovery, on a safari in PA, Knoebles amusement park, NY, PA, VA.  Running myself ragged entertaining these guys.  I think I am trying to fit in all the fun stuff we may not be up to in Sept. after CIMT and preschool starts.  Either way lots of fun!