Friday, October 23, 2009

Bucket Head

Here we go again!  We had a good week and hope all of our readers did too.

Tuesday was a big and busy day for us.  Tuesday morning at 7:30am we had our first appearance as the March of Dimes ambassador family.  They had a leadership breakfast at the hospital where the babies were born.  They invited business people from the community with the hopes of getting them to form a team for the 2010 walk.  After one of the neonatologists gave a really interesting talk about current research on premature kids, I was up.  My speech went pretty well.  I got through it, although I did tear up when talking about Adam.  I have never publicy talked about our story and actually don't talk much about it to anyone.  I'm glad I got through the first one and I'm sure the next ones will be easier.  After the breakfast was over we were able to take a tour of the NICU at Forsyth Hospital.  They have completely redone the NICU since we were there.  If they hadn't told us we were standing in the old NICU we would have never known.  They really changed the entire layout and it is so nice and new.  It was neat to see the new place.  The kids were not able to come to the breakfast because the hospital has a strict visitation policy right now.  No one under 18 is allowed in the hospital to visit.  Therefore we drug our favorite babysitter Janice out of bed early in the morning to come watch the kids! 

Tuesday afternoon we drug Janice back over to babysit Will because Lindy had an appointment with a couple new doctors and we both wanted to be there.  We met with our physical therapist, Heather, a neurologist and a pediatric othropedist about Lindy's cerebral palsy.  These three work together with kids with cerebral palsy.  We had never gotten a formal diagnosis of cerebral palsy from a neurologist, although other medical professionals have told us she has it.  It was a long appointment.  She got a hip and pelvic x-ray, that they said looked good.  We met with the neurologist for a long time.  Towards the end Lindy started waving and saying bye so I think that helped wrap up the appointment.  The orthopedist appointment was fairly short. 

Lindy amazed them all, particuarly the neurologist.  We went through her LONG medical history and she was amazed that Lindy can do all that she does, despite having been through so much.  She does have cerebral palsy, but we don't have a definite kind determined right now.  I think they ended up saying she has mixed cerebral palsy.  She has a little tightness in her ankles but she has some low tone in her trunk and she is a little uncoordinated and doesn't have great balance when walking.  All of her symptoms are common to different types of cerebral palsy.  So she has it, but look at her.  Is it stopping her?  NO!  The neurologist usually orders an MRI, but she actually didn't for Lindy.  An MRI will tell us what actual brain damage she has, but it doesn't change her plan of care.  To get an MRI you have to be completely sedated and intubated.  Something we don't really want to do right now.  The doctor felt the same, especially since she has paralyzed vocal cords and we don't want to do any more damage.  If she has any other kind of procedure that requires sedation, will we do the MRI as well then.  The neurologist had to tell us about all the bad things that can happen as a result of cerebral palsy.  They have to warn you about things like increased risk for seizures, probable learning disabilities and possible attention problems.  It's not really anything we haven't heard before.  The orthopedist is the doctor who would prescribe muscle relaxers or give botox to her joints if she ever got so stiff that it greatly affected her.  Right now Lindy needs none of that.  Hopefully she won't need it anytime soon!  The only thing she wants to do is to increase Lindy's brace on her right foot to a tall one, like her left leg.  She said this will give her better balance and will allow her to strengthen her trunk muscles while not having to worry about her stability and balance so much.  So I guess we'll be recasting her soon for a tall brace.  It doesn't change anything so we're fine with it.  We were all pretty exhausted when we got home that afternoon!  I think Will had a great time outside with Janice though!

Wednesday we had a our normal vision therapy in the morning and hearing in the afternoon.  Leslie our vision therapist read my mind and brought something I wanted her to, but had forgot to call and tell her to bring.  I like when people read my mind!  She brought a little screen that Lindy can color on to get more input.  Lindy doesn't look down when she is coloring so we are trying to give her more input.  We had fun in hearing therapy playing with Halloween stickers!  The kids haven't ever really played with stickers but they had fun!

We have had a beautiful week in NC.  Yesterday we were able to get out and enjoy the pretty day together.  We went to Wake Forest's campus and walked around.  We got to see the marching band practicing which both kids liked.  Will clapped anytime they stopped playing.  We walked over to some nearby shops and we went out to eat at our favorite Italian restaurant!  A great day was had by all. 

In the world of the kids, not too much has been going on.  Will as become obsessed with wearing things on his head.  Hence the title of the post.  He's walked around with buckets and baskets on his head all week.  Tuesday he put his bowl of fruit on his head.  He has gone pee pee in the potty one more time, on Wednesday evening before he got in the tub.  Lindy Lou has grown leaps and bounds in her walking skills.  She really can walk across the house now.  And she chooses walking over crawling a lot of the time now.  We still marvel when she does it.  It is just so cool that she is finally walking!  The best thing this week is that she has actually taken some decent naps.  Anywhere from 1-2 hours this week.  It's SO much better than the 20-30 minute naps I got for 1.5 months. 

The most fun activity in the house this week has been peek-a-boo.  Lindy really started this new version of the game but Will has picked right up on it.  They will hide behind you and come around and 'surprise' you.  It is so cute.  Or they will stand in your lap and crouch down (that is hiding to them) and pop up in your face to surprise you.  Or today they were playing peek-a-boo back and forth in their cribs after I put them down for their naps.  I could hear them both in there laughing and having a good time.  It's the little things in life that make them happy! 

I hope you all have a great weekend.  I get a girl's weekend away.  Woohoo!!!

Bucket Head Boy

Pulling up a leg for a story.  Will has been on a book binge this week.  He throws a tantrum if you won't read one to him!
Deep in thought.

Is that not the sweetest smile around?

Another sweet smile!

The peek-a-boo hiding game.

Will as Linus

A couple of monster leaves I found while we were out enjoying the weather yesterday.
The reason I bought Will a belt last weekend.  I have found him twice today with his pants around his ankles.  After the second time, I put the belt on him!

You didn't think we were out of Halloween shirts did you?!  Of course not.  Thanks Katie and kids for this set!


Cheryl said...

Good job on your speech. I enjoy hearing about the kiddos. Lindy's smile always makes me smile. Will is to funny.

Gald to hear about a girl's week end. You're such a busy mom, need time for yourself!


becca said...

Ohoohhhhh! Jamie! Where did you get Will's belt? Our 2 year old son is doing that same thing. Doesn't help that we have to get 3T pants for length but for the waist they are too big.

I need to find a solution to bed time as well - we keep finding him undressed including his diaper....

Jamie said...

Hey Becca, we found the belt at Gap Kids. It was $12.50 but worth every penny! We use it ALL the time now!

No help for the night time situation. Thankfully I haven't had to deal with that yet!

becca said...

Thank you so much! That is definitely worth every penny to me! I'll be checking out Gap Kids next time we are near the mall.

Yeah, I'm not sure what to do beyond possibly putting him in a onesie and then pjs on top but he is a hot natured little guy.....I'll keep you posted. :)

Anonymous said...

buckethead is a good halloween costume