Wednesday, March 27, 2013

Seventeen Months

Ben and Ainsley are 17 months old!  They are actually getting closer to 18 months so I needed to get it in gear and do a quick update.  I'll do a more detailed one after their 18 month well visits.

Ainsley - You are so SMART!  I know everyone thinks their child is amazing but you seriously blow me away.  You have picked up things so many things we aren't intentionally teaching you (this can be both good and bad...very bad sometimes).  You know that after Daisy goes outside she gets a treat and you like to give it to her and you remind us by pointing at the treat jar.  You are getting good at retrieving objects we tell you to get - like "get your shoes, Ainsley" and you bring us your shoes.  You say SO MANY words: Mama, Daddy, Daisy, Bubba, Ben, Lilly (Willy), Sara, Lindsay, and other kids at daycare, diaper (more like dido), coat, car, cup, crackers, more (and the sign), all done, all gone, bottle (ba), hello, hi, bye, shirt, sock, shoes, outside, water, bow, and more I'm sure I'm forgetting. 

You are usually happy and giggly.  You have started asking for a bow for your hair.  This morning you went and pushed on your bedroom door until I let you in and you went and pointed at your bows and said "bow!"  You're mama couldn't be more proud!  Hehe!

You definitely have your own personality and are starting to say "no" more.  You are also in a pretty clingy phase and want to be held all the time if possible.  You get a little jealous of anyone else sitting on my lap - including your brother and you have tried to push other children out of Miss Sara and Miss Lindsay's laps at daycare. 

You are getting so big and becoming more independent and we love watching you grow every day!

Benson - You are so sweet and handsome!  You have been struggling a little with sleep lately which I think is to be blamed on your molars coming in.  Mom and Dad (Dad mostly) have spent some time with you during the nights and you love to snuggle.  You really enjoy looking at our phones with us and cuddling on the couch.  In the mornings you give us "head hugs" and are so sweet and lovey! 

All that being said you are in  a phase where we are working every day on being gentle and not hitting.  You don't (usually) hit out of anger.  You just get really excited and get your arm going and if someones face is in the way - watch out!  You also like to grab your sister's hair and pull so we probably say "be gentle" about 200 times each day.  You are definitely improving though!

You are really eating better here recently.  Before, it wasn't so much that you wouldn't eat as in between bites you would chuck your food on the floor.  You have been really great the last few days about not doing that though - yay!  Daisy will be disappointed - hehe!

You are becoming more and more independent and getting where you want to go all the time now! You are such a sweet and adorable little boy and we can't tell you how much we love you! 

Wednesday, March 6, 2013

First Trip to Gillette

Tuesday night we left for our first visit at Gillette.  We saw Dr. Gormley, who is a Physical Medicine and Rehabilitation Physician.  He is who we see now since Dr. Ramsey moved to Oklahoma City.  I'm not sure if Blank is working on bringing another provider who specializes in this area to Des Moines but as of right now the two closest doctors recommended by Dr. Ramsey are Dr. Gormley in St. Paul and another doctor in Kansas City. 

We left around 6pm after supper and baths.  We put Ben in his pajamas and he slept the whole ride up.  He was pretty dazed when we woke him up at 10pm in a strange place and got into our hotel room.  Then he was awake for awhile checking out the place but we all eventually got settled in.

We got up and had breakfast at the hotel and headed over to the clinic which was super close.  It was very easy and low stress.

The appointment itself went very well.  Dr. Gormley was amazingly kind and spent close to 45 minutes in the room with us.  He took time going over Ben's history and explaining all kinds of things we could see in the future.

He said he was 100% sure Ben would walk.  No problem.  Like I said in my last post, my heart knows this but it's nice to have a smart doctor tell you too!  He used terms like "high functioning" and "productive life" which was great to hear.

We did also get a definitive diagnosis of Cerebral Palsy.  We knew this would come but it still stings a little to hear it.  He meets all four criteria for diagnosis though: Brain Injury. It happened early in life. It is static (not getting better or worse). And it causes physical impairment.

There is nothing about CP (Cerebral Palsy) that talks about cognitive function.  Often there is cognitive impairment related to CP but there doesn't have to be and only time will tell.  Ben's speech is delayed but Dr. Gormley seemed encouraged by his cognitive development at this point.

He also talked about how kids like Ben will have a "stairstep" pattern.  It describes EXACTLY what we see with Ben: he won't do something for a long time and will be "delayed" then all the sudden will start doing it.  Then continue at that level and not make progress then start doing something new.  We've seen it over and over with Ben - sitting up independently, bearing weight in his legs, and crawling/scooting.

All in all we had a great visit.  We will follow up in about four months.  We talked about future treatments including Botox to relax his hand muscles and the possibility of surgeries in the future due to problems caused by his hypertonicity (tight muscles).

And as an added bonus after our appointment we got to stop and see my friend and freshman roommate, Stefanie!  It was so fun to get to see her and nice to catch up for a little bit!

Monday, March 4, 2013


Ben is an official "scooter" now.  The last few days he has really taken off with the scooting action he does.  He even made it from the living room to the kitchen.  He loves being able to keep up with his sister more and be where the action is. 

I'm going to take just a second to say that it's hard having a child who's different.  I generally try to keep it light and positive but it's hard.  Strangers and people who are just acquaintances ask if the twins are walking and getting into everything and it's getting harder when we say Ben is not.  When he was a little younger you could just smile and say "No, not yet" and they would just think he was a little late to do it but not realize there was a problem.  It was a white lie to avoid telling the story.  Now people wonder why our almost 17 month old son doesn't walk.  Or crawl.  And we have to explain he had a stroke.  And it's hard. 

And it's hard not knowing when he will walk.  Or crawl.  Or IF he'll walk.  My Momma Instincts tell me he will.  When he scoots he uses both legs.  He just does it on his side because he can't use his left arm. 

My Momma Instincts tell me not to worry.  That he'll get there in his own time.  That he'll be happy and healthy.  And that's all this Momma really wants.

So, without further ado, here is our scooter!