Wednesday, July 28, 2010

Counting Stars



We just got back from an incredible weekend!  Friday night we had the pleasure of attending an Andrew Peterson concert in our home town, Oak Ridge Tennessee!!  Whoohoo!  He is one of our favorite music artists so we were really looking forward to this event.  My cousin Emily is adopting a child from Ethiopia and had this brilliant idea of asking AP to do a concert to help raise money!

He sang several songs from his newest album, Counting Stars, which is wonderful!  My brother in law (Lee) got to sing Matthew's Begats on stage with him which thrilled Josiah! (This is one of his favorite songs)  Ben Shive sang a song requested (4th of July) by my 6 yr old niece, Anna, which was really special.

Josiah got to visit with AP for a few minutes after the show!  This was so fun to watch.  He told AP all about Levi and the words he knows and a little about Abby.  So sweet.  After hearing that Abby is the big sister Andrew asked J if she takes care of him.  Josiah thought for a second and said, "no, I take of her."  He laughed and said that was great.  Little did he know how true it is.


video



AP, Ben Shive and Andy Gullahorn talking about "Counting Stars"...






My Sis and I got to hang out alone together Saturday after a fun day at a water playground!  A perfect solution to a scorching hot day.

























A bitter sweet portion of our time together was spent at a celebration of life service for a long time family friend who passed away last week.  It was amazing getting to hear about all the lives he touched and the way he reflected Jesus until his last moments.  I just hurt for the family that is left behind, although they showed such hope in the midst of their sadness.

Sunday Abby got sick with a fever and proceeded to have 12 seizures that day.  Our plans for camping were put on hold as we tried to get her stable with meds throughout most of the day.  The Diastat was out and ready to be used, but thankfully we didn't have to make a hospital trip this time.  Monday was spent resting and trying to get Abby feeling better.  That night we got to have supper with Matt and Connie at Big Ed's (our favorite O.R. pizza!) to catch up after their trip to Europe!


Tuesday we spent the day on the lake!!  Such fun.  We went out on Papa and Grandma's boat, swam a little bit, soaked in the sun, ate at a neat little restaurant and fished.  Levi wasn't a happy camper most of the time, but took a short nap while we cruised.  J and A enjoyed the water!















Now we are home and Abby still isn't feeling great.  She has a low grade fever and has had a seizure today, so we are just chilling at home.  There is enough laundry and cleaning to do to keep us busy for several days!

Thursday, July 22, 2010

Season of Calm



These past several weeks life has seemed pretty "normal."  I'm appreciating the lull in all things exciting and stressful.  Summer school for Abby has been a bit lower key and our schedule has allowed time for other things, which has been nice.



Updates on Abby...

Eyes- she had her yearly retinal exam last week and pressure check.  The doctor was encouraged that she is showing more visual interest in her world.  Her right retina is completely attached still and has potential for vision.  I even got an ultrasound picture of her retina... something that holds a lot of emotion for me and Patrick.  Her pressure was 23 which is stable.  He changed her two drops twice a day to a combo medication that is only one drop twice a day.  Nice!

GI- We are still feeding Abby through the 'temporary' G-button.  She seems to be tolerating her continuous drip, and we have slowly started introducing small bolus feeds... just to see how she will do.  Today at hearing clinic she weighed 34 lbs, up 2 lbs from a previous check.  Our dietician still wants her to weigh more and showed me that she is well below the growth curve.  To get her to 3rd %ile she needs to weigh 40 lbs.  We will start giving her a higher calorie formula soon.

Ears-  Both looked good today.  Her left hearing aid is acting up so it has been sent for repairs.  Testing in the booth showed responses b/w 50-80 db without her aids!  This is considered moderate.  But we still don't know how clear speech is with or without her aids.



We are looking into the possibility of a future wheel chair accessible vehicle.  Right now we are just gathering information, prices etc about this option to make the best choice some time in the near future for our next family vehicle.  The bigger and heavier she gets the more pitiful my back feels.  Thinking of the possibility of being able to wheel her in and out of the van sounds pretty nice!

Wednesday, July 21, 2010

13 months


Our littlest munchkin is 13 months old!  He is 20 lbs 14 oz and very active.  Table foods are preferred over baby food now, which in some ways is easier.  I just loved making his food so much, I miss knowing he is getting great nutrition.  These days he eats what he eats, and it's not always the healthiest.  Veggies are hard for him to chew with his 8 front teeth so he tends to go for the breads and crackers.  

He is still cruising and walking with our help, but has no problem jetting up our stairs... very quietly I might add.  When he is caught he giggles and tries to climb even faster!  so funny




The nightly wrestling matches with Daddy have become more interesting to him.  He joins in at will but often retreats quickly after.  He likes to make sure Mommy is nearby for comforting as needed.  I love it!

Screaming has become his communication method of choice.  Although he knows a few key signs he pretends he can't, or simply chooses to scream instead.  We're working on it.  He is babbling more and making some really cute sounds.  He loves to 'talk' to Josiah, watching his brother very closely for an example.

One of his favorite words is 'Abby'!  It sounds more like 'Abm'.  It's about the most precious sound I can imagine.  He says it so lovingly too.




I just love kissing those soft little curls on his head!

Oh, and he is giving kisses now too!  sweet wet ones!

Gone Pick'n


This summer we've enjoyed spending time on our property picking some blackberries!  Patrick's favorite dessert is blackberry cobbler, so we've made a few.



Josiah is learning the technique of picking... avoiding the stickers and all!  There have been a few tears.

Saturday, July 10, 2010

Guess Who...

Jumped off this...



today!

(Wishing we had our camera while watching our 4 yr old Josiah jump off the high dive without hesitation and swim to the side all by himself!)

Wednesday, July 7, 2010

Prenatal Models

What would it be like to actually hold a model of your unborn baby?

Instead of just seeing an ultrasound image or even a 3D or 4D experience, you can touch an accurately sized replica of him or her.  After having a micro preemie we know first hand what a 23, 28, 32 and 34 week old baby looks like.  But for those who long for an extra measure of bonding during pregnancy this clip might hold an important development for just that.

The bigger interest for me is the possible uses of this technology to promote LIFE for the unborn to those who don't understand fetal development.  Who can hold a life size model of a 10 week old fetus and deny his/her humanity and unique form.

Could this be the future of prenatal experience?

(pause the blog tunes @ the bottom of the page)

Monday, July 5, 2010

Special visitors

The boys are off at the pool and as I sit with Abby who has a little fever I thought I should update a bit.

We've had a wonderful week of visitors!  First my mom and dad came for a short but sweet time together before they head back to China.  After some good talks, good food and fun just being together we said good-bye for another stretch of separation.






This past weekend Papa and Grandma were here and the kids enjoyed more grandparent love!  We all headed to the botanical garden and later celebrated Papa's birthday on Saturday.  Patrick and I got up early to sneak out for a quiet breakfast together yesterday morning, thanks to grandparents!  This might become a new tradition... "date breakfast"!  If only I were more of a morning person.




There is another new visitor that arrived at our door step Friday, although not a temporary one.  Our last appointment with Abby's neurologist we discussed her seizure patterns and complications associated with the status (prolonged) seizures that she is prone to.  The doctor has ordered home oxygen for an extra measure of support during times of cluster seizures or illness that usually leads to the long, stressful seizures.  So now we have a concentrator, 2 O2 tanks and one portable tank at our house.