Tuesday, July 15, 2014

Zillupdate 2

Time for another update on our little man and the going ons around here.
Major Happenings:
We have another little one added to our cousin clan.  We are so pleased to welcome Baby John.  He is truly the sweetest little baby.  I’ve only heard him cry once and even his cry is precious.  I’m sure his parents have heard him cry more, but in my experience with him oh. My. Gosh. Presh.
Zilla is not so sure about all of this.  He has a little jealous bug and if hubskie or I are holding the new little man, he starts to climb up our legs and bounce.  Also, while the newbie was napping he tried to hit his swing with a stick.  We’re going to need to work on this if there are more small fries in our future.
Maybe act a little more like this....

And a little less like this...

Little Reese’s Pieces has turned 1!  How wonderful it has been to be so close to her as she has grown this past year.  It has been a true blessing going through the adventure of new motherhood with my sister.  It has also been wonderful to watch Reese and Zilla grow up together and how their interactions have changed from sitting and staring at one another to fighting over toys.  Little Reese, I just want you to know that I love to watch you stand your ground with Zilla when he tries to take things from you.  You are one smart cookie.
Any day now we will add another new cousin to Zilla's clan on hubskie's side!  We are so very excited to have a new baby to hold in Houston!

Therapy update
Zilla continues to make progress in therapy.  I think the most excited I have been with a new “milestone” was watching Zilla choose to use his left hand to feed himself with a spoon (though messily).  It told me that maybe all this therapy and stretching is doing something.  Although, I have to say I think he is catching on to us when we try to encourage him to use his left hand or try massaging/stretching it while he’s doing other activities.  He will pull it away more and become upset when I place items in that hand rather than his right.  Right now, he’s still pretty cooperative with his therapists.
With his life skills or speech therapy,  I've finally started to feel like I am clear on our goals with this therapist.  For a while I had a harder time putting into action what we are doing at therapy, but she has recommended some activities and we are doing our best to put them into play at home.  This therapy has taught me that Zilla has a pretty low frustration tolerance.  When he has trouble getting a puzzle or shape sorter right away, he will throw the item or start to screech.  I can't decide if this is related to his CP or if he just inherited this trait from his momma.
  Zilla’s vocabulary has increased some and I don’t know if it’s a product of therapy or just growing.  Either way it is so cute to hear him say “nana” (banana) “Cacka” (cracker) “shee” (cheese) "ffffu" (fruit) “uh oh” and “boo” (boots).  There are others and his receptive language is also making leaps and bounds…although his ability to understand is a different thing than his willingness to listen (aka he might understand please be patient, but patience is not his top quality). 
We have also been trying to work on Zilla's fits.  He can throw a tantrum to challenge a well seasoned two year old's.  It seems that it is usually due to a break down in communication and he decides that crying will get him whatever he wants.  This cannot become a habit.  We've had to start "Time Outs" or "Together Time" where Jason or I will take him to a quiet room and sit with him until he is ready to communicate more calmly.  This can take a couple minutes to multiple times in a row.  

Sometimes I can become very overwhelmed when it seems as though we are having a day filled with tantrums.  Nevertheless, it is amazing how bed time will come along and we all say our prayers together, he cuddles into my chest, and I choke back tears singing him to sleep because my heart cannot contain the joy he brings to our family. 

Ways we have tried to enact some of the exercises at home: 
 Up until about a month ago I found the easiest way to encourage him to use his left hand was to hold his right hand while walking around. If he insisted that I hold his left hand while walking, I’d take that opportunity to do some stretches and massages on his hand. I’m sure I have, on more than one occasion, looked entirely ridiculous squatting and waddling down the street with him moving his arm around.  But then it happened, he became more independent with walking, and gosh has it made it harder to do therapy.  We're actually having to do some of the activities we do with the therapist and toys.  He doesn't like sitting still much, which can make these activities challenging.  But we are doing our very best.  Below are some videos of our therapy attempts.
This is me guiding him around the kitchen keeping hold of his right hand.

Go Zilla Go!  Use that left hand!

We are teaching him some signs to help with communication until he starts using more words.  His favorite sign is "help"   For example, "help, I would like to touch the electrical outlet."  Um. No. 

This game forces Aidan to use his left hand in order to pull the blocks apart.  Oddly enough, he finds this very satisfying.

Zilla also loves this exercise for his core strength:

One of his favorite fine motor toys is a ball and hammer game.  We have a couple of variations at our house but I never remember to video him playing with it.  The real challenge is that he will usually use his right hand to pick up and place the ball as well as hammer.  He has even picked up two balls at a time with his right hand in order to avoid using his left.  He is not impressed when I try to hold his right hand and force the use of his left. 
Another fine motor activity we do is putting coins and buttons into his piggy bank.  This one encourages his pincer grasp.  It's one of the areas he struggles most with on his left hand so I don't make him do it too often because he becomes frustrated very fast. 

The life skills therapist has really encouraged us to use games that are closed ended in order to help with Aidan's patience and attention span. For example, doing shape puzzles, stacking cups, or shape sorters where there is a definite end to the game.  We have to say things like "okay, mommy's turn to do this one (aka Zilla refuses to do this one) and then Zilla's turn" and "first put the last piece in and then we can go play with the ball."  I haven't gotten any "successful" videos of these because they are his least favorite activities.

For Gross motor skills we mostly rely on our outings to the park.  We encourage Zilla to crawl up the slide, stairs, and through the tunnels to give his hand some weight-bearing exercises.

Most of the time our home therapy looks a little something like this:

Other news:
Zilla "ran" his first 5k!  One day I just decided I wanted to run one with him and signed us up for a race about two weeks out.  He did great and didn't even get fussy during the 30ish minute trek.  Zilla and mommy came in 16th in mommy's age group (out of about 40).  Not bad for first race back in the game + a stroller in tow.   Hubskie also came out to support us and cheer us on as we crossed the finish line.  This was AMAZING of him and so helpful

And now for an un-sponsored shout out (because my 30 person readership does not warrant any sponsors)...
We bought BooginHead Squeez'Ems a couple of weeks ago and they're my new favorite thing.  I initially bought them because Zilla's daycare said that once he transitions to the toddler classroom he will have to feed himself completely and if I intend on continuing to bring his own food, such as applesauce or yogurt, he would have to use the spoon himself.  Just review the video above, his right hand is not that much better.  Onto plan B, Squeez'Ems!
I know you can buy pre-filled pouches at the store, but now I get to choose what to put in them.  We have put yogurt, applesauce, and even oatmeal in them.  It's such an easy and far less messy on the go snack.  I think this product could generally be useful to kids who have trouble with utensils. Also, this brand is surprisingly easy to fill because the top comes off for a bigger opening.  I only wish it held a little more.
We had Zilla’s MRI today.  We had to head back to Scottish Rite, even though the original plan was to have the MRI on June 24th at Children's in Plano.  There was some mix up with insurance and our PCP, so we moved it back to good ole Scottish Rite. 

For some reason, Zilla woke up at about 4:45 am the morning of the MRI.   He went back in forth between crying and sleeping while being rocked. This really threw a wrench in our groove, but we rolled with it.  He was going to be fussy either way.  We gave him his last sip of water at 5:55 am and then had to cut him off from all liquids and solids.   He had a rough time all morning; being deprived from his favorite activity, eating, and all.  But with a little magic from daddy, we did get a few moments of peace in too.

Since Zilla was in such a bad mood over all of this, they had to give him Versed in order to help calm him down so that they could take his vitals.  This is basically a Benzodiazepine...aka, my baby was drunk.  I was a little nervous about this.  I don't really love even giving Zilla Tylenol, but it did help him forget about his extreme hunger and exhaustion.  Also we got this silly video of him being all loopy.

They had originally told us that only one of us could go back into the MRI room with Aidan.  After some discussion we decided that it would be best for hubskie to go as he was more likely to be emotionally stable; I was more likely to break down crying.  Although, I only cried twice today, and considering I cry during sappy commercials, this is quite a victory!   But then they took little man back without either one of us going with him. I was a little put off, but they recommended we go to the cafeteria to help pass the time.  This was a good suggestion and we ate some grub and momma drank some coffee while we waited.

Altogether he was in the back for about 45 minutes.  When they wheeled him out I was just all over the place with emotion.  My first thought was actually, "ET?"  And my second thought was, "okay can I hold him now?"  He was shivering and groggy and when he came out of it, boy was he cranky.  Rightfully so.  His head probably felt funny and he was super hungry.  

I firmly believe nothing can prepare a parent for moments like these.  You just want to take away any and all discomfort. 

He sucked down two bottles of pedialite and then started drinking some milk.  They cleared him for discharge and we headed out the door. 

By the time we made it outside, Zilla wasn't crying anymore so we walked around Scottish Rite's new all abilities playground.  It was really very neat!
Oh hey wheelchair ramp play structure! 
Once momma and Zilla got home he was starting to feel more like himself.  We played with the red ball Scottish Rite had given him for being so brave.
And of course, we ate some grub! 

We will receive a phone call in the next couple of days with the results. 

All in all, things are pretty blessed around here as we continue to run this beautiful race! 

That's all for now, 
The Vrlyfries