Tuesday, December 21, 2010

The Other Guy

So, I am in love and feeling so conflicted.
  Is it possible to have a heart THAT big?  To adore two little angels THIS much? 
I feel like I am cheating on my Roa when I stare in awe at my Gunnar's head control,  when I watch his little body twist at the trunk, when his little feet kick up to his belly.  He is so PERFECT!  And happy... calm. So different.
Things seem to be going right on track for Gunnar T.

I have to say that I still have fears.  That sick feeling in my tummy when he arches and spits up.  That anxiety when he has his 7:00 "Witching hour" and is fussy without much reason and a challenge to soothe. The exhaustion of being up at 3:00am with a wide awake infant.
 I remember all to well the HOURS of rocking and pacing with screaming, arching little Roa.  The nights of absolutely NO sleep.  The inability to soothe and console him which lead to feelings of doubt in my parenting skills.  Crying and Crying.... all of us crying.

With Gunnar, it is just different.  I can read his cries.  I can soothe his tears.  I needed this moment of motherhood.
  I needed that feeling of peace when you hold your baby.  I needed that sense of true mother/infant bonding that I was robbed of with Roa. 
It wasn't that I didn't bond with Roa completely... just in a different way.  It was like the way a mother lion protects her cub.  It was with a nervous edge- to fix things, to try and understand, to heal him, to plead to others to give us time to figure him out and not judge our overprotection.

I feel just as I wrote... robbed of motherhood joys with Roa.  Robbed of watching his accomplishments and the wonders of a growing child.  HE was robbed of a comfortable babyhood.  HE was robbed of peaceful, easy development.
It makes me so sad.

Yet, I feel such joy when dressing little Gunnar and he doesn't hold his arms and legs stiff and tights.  I laugh with joy as he brings his little hands to his mouth and chews away..."Wow, look at that hands to midline skill!"  AMAZING! 
Last week, he rolled from his tummy to his back without arching, crying, refluxing.  He is perfect.    

I hope, I pray, I mourn, I celebrate.  I am conflicted.   I am so in love with two such different little angels.

Tuesday, December 14, 2010

Chatting about updates

After my last post, Laurie, Roa's OT and Lynsey, Roa's speech therapist and I had a good long talk about how we will approach Roa's therapy time from here on.  It was great to get things out in the open about Bryan and my worries and frustrations with Roa's progress in the area of communication.  Lynsey was very receptive to my thoughts on therapy and we will be looking continuing with our twice a week session along with possibly adding some private speech therapy weekly.  We also talked about all the therapists being more consistent with the routine and incorporate repetition of songs and basic sounds to increase Roa's interest and chances of imitation.  We are so pleased with the Birth to 2 staffs willingness to hear us out and attempt to meet our needs.  They are very family friendly.

One of the things that has come up with other speech therapists and parents of kids with communication needs is the current use of the Ipad for assistive tech!  What an exciting avenue of language that this mainstream instrument can give to people with disabilities.  Lynsey wants to start Roa's attempts with the Ipad in January.  If things go well, Bryan and I will have to consider purchasing our own Ipad for Roa- not a cheap purchase, by anymeans, but more reasonably priced compared to some communication aids out there.  We are optimistic about it!

In other therapy news, Roa's new gait trainer was supposed to be here last Friday, but Reliable Medical mixed up the order and we are once again... waiting.  Roa still continues to use the school miniPacer, but we are excited to try the next size up and have Roa's very own GT!  Hopefully, soon....  nothing ever goes smoothly, I must say...

January 3, Roa is scheduled for his next round of Botox.  We are seeing alot of tightening of his adductors with attempts at sitting.  He also has increased tightness of his hands while grasping.  We are happy botox is on it's way.

Now, off to research funding sources for an Ipad while my boys nap!.....

Tuesday, December 7, 2010

Happiness is... a baby brother

Ok, so Roa hasn't completely been laughing and joyous over little Gunnar's arrival.  Honestly, we are getting a little two year old tantrum time and alot of tears over minor things, but that is to be expected.
We are definitely entering the communication frustration stage in Roa's life.  He is not yet talking.  Not yet even giving us a 'yes or no" verbally or gesturally.  We are ALL frustrated and tired of the cry for no and giggle for yes... the scream if we don't understand what King Roa desires.
Roa receives speech/language therapy twice a month through the school district.  However, we haven't seen much progress with the therapy. I am an "old school" Early Childhood teacher and feel that motor-based delays should be supported with an oral motor approach along with drill and practice with beginning sounds.  The philosophy of today's speech therapy seems to be language-based "give them words, talk to them, and ..wait" 
I am not a patient waiter, I guess.
 I am frustrated that Roa can identify shapes, animals, objects, colors, even a few numbers. He can follow simple directions and comprehends so much! Yet expressively, he just laughs, cries, screams, and gives us a few occasional sounds and attempts at words.
We've tried the assistive tech. switches and communication board.  We tried the picture approach.  He's not interested.
Speech therapists and parent of "speech" kids, PLEASE respond and help me sort through my frustation!

Mom and Me

Mom and Me