Monday, March 30, 2009

Happy Birthday Josiah!!

We have a three year old!

This year Josiah has...

Chosen Veggie Tales as his favorite movie
Psalty and Andrew Peterson as his favorite music (esp "Matthew Begats")
Learned to swim
Potty trained!!  
Loves to help Daddy tinker in the garage
Says he wants to be an astronaut
Perfected special "chores" to help Abby... bringing cans of milk, getting her toys
Graduated to a Big Boy bed
Prays that Abby will learn to walk and see

Funny things he says...

"Blanklet"  (Blanket)
"ipop" (ipod), "puter" (computer), "Mary and Jofus" (Mary and Joseph)
"Hey dad, are you in the know?"
"Mommy, is your hair brown like my poopy?"
When put in time out will cry and say  "mommy, will you pray for me?"
While sitting on the potty asks "Will you tell me a story?"... to stall
Asks select people if they have a baby in their tummy like mommy
Prefers "clean" cow to "dirty" cow for snuggling.  (clean cow is much dirtier!)
Named his rocking horse "paco".

Josiah's Birthday Movie

(pause blog music @ bottom of page first)

Wednesday, March 25, 2009

25 Weeks, and more seizures

We've made it to 25 weeks!  I am so thrilled.  Our baby's eyes might start opening by the end of this week.  Abby's eyes were fused shut when she was born and didn't open for a while.  

I remember a 25 weeker born soon after Abby who "lived" across the aisle from Abby.  She was breathing all on her own and was throwing the biggest and tiniest screaming fit I had ever seen in her isolette.  Her eyes were wide open.  It was almost unbelievable that a baby so small (probably under 2 lbs) could be so feisty and healthy.  

(For those who have given birth to a 25 wkr, I am by no means saying that all 25 wkr's are this fortunate.  I just like to remember that baby during this time of my pregnancy, encouraged by the gestational mark we have achieved!) 

I saw that baby again after Abby was discharged from the NICU and attending a therapy program in Knoxville for ex-preemies.  She was very healthy looking, just tiny.  

Abby definitely seems to be having new seizure activity.  I spoke with the neurologist's nurse today about what we have been seeing.  The doctor has ordered blood tests to check her Keppra and Zonegran levels.  We asked for another EEG but I'm not sure that will happen any time soon.  Hopefully we can get the labs drawn without too much drama this afternoon.

For those interested, the new seizures she is having are Absence seizures and probably Complex Partial seizures.  She has had Absence seizures before, but they have become more frequent lately.  When she has these it's like she is in a daze, "staring" off to the left and unable to respond to us for 10-20 seconds.

 The new seizure activity manifests itself through "automatisms" and rapid breathing.  (automatism:  unconscious and repetitive movements).  For Abby, it looks like she is gently bringing her hair over her face on the left side, over and over again while turning her head from side to side.  She also seems agitated during and after the seizure.  They only last about 15 seconds and are sometimes hard to recognize.

We think because she is having more seizures daily that her behavior is being affected.  She has been more "out of it" than usual, not cooperating during therapy or activities and just wanting to be left alone.  She's also been sleeping more than normal, and is often agitated when she is awake.

We are really hoping that we won't have to go back up on the Lamictal again.  But, of course we want what is best for our little sweetie, even if it means more drugs.  With Abby it's been very difficult to find that delicate balance b/w seizure management/drugs and healthy development.  
The drugs probably keep her out of the hospital, but they also have side effects which contribute to all sorts of set backs.

I'm watching her now as she sleeps off one of her tonic clonic seizures.  It really breaks our hearts.

Monday, March 23, 2009

Our piece of Earth

Today we are officially land owners!

Patrick has always dreamed of having a "farm".  Some dear friends of ours live on a mountain nearby and have some beautiful property over looking the valley.  

We bought a 20 acre piece near them on the mountain and are really looking forward to spending time up there enjoying nature and the gorgeous view together!  It's still rugged enough that we can't easily take the kids near the bluff for a picnic yet.  Soon we hope to clear some of it and put in a gravel road so that we can go as a family for some out door relaxation.

Celebrations at home tonight with grilled cheeses!

Wednesday, March 18, 2009

24 weeks

We made it.

It was a gorgeous day, and Patrick stayed home to work on our garage.  He prepped and painted the floor with a special paint so it looks super neat and clean!  (Thanks for your help Adam!)

The kids and I stayed outside with him for the majority of the day, enjoying the sunshine and helping as much as we could.  Josiah loves to "help" Daddy outside.  He brings his tools and tinkers on things.  It is really cute.

Abby liked the breeze and sun too for a while.  She has had a rough couple of weeks lately with new seizure activity and almost weekly low grade fevers.  Not sure what the fevers are from, there aren't any other symptoms accept for a slight runny nose occasionally.  She definitely acts like she feels crummy when the fevers come, as well as suffering extra seizures.  We are 5 mg away from eliminating one of her seizure meds (Lamictal).  Because of her seizures lately we are waiting to see some improvement before making any more changes.

Hope you all enjoyed this beautiful day!

Tuesday, March 17, 2009

Special visitor

A few weeks ago Pipai (Patty's Dad, Bill) came for a visit!  He brought his cool car too... even in the freezing weather.  Josiah got to have a special ride in the cobra.

Dad was working on building this car with Patrick during Abby's 6 month NICU stay, 5 years ago.  It was a great stress reliever for Patrick and now holds some fun memories.

Sunday, March 15, 2009

23 weeks 4 days

This is a significant day for us.  Abby was born at this gestational age.  We know exactly what this new little boy looks like today, and are overwhelmed with thankfulness that he is safe.

Thank you Lord!

I think this means we can officially start celebrating each week that passes!  Time to find some restaurant coupons.

Abby- 23 wk 4 d

"My soul waits with longing for the Lord, and in His word I put my hope."

Psalm 130:5

Saturday, March 14, 2009

Pi (3.14159) Day and big kid beds

Out with the cribs and in with the big beds!  Josiah and Abby are in the trundle Patrick slept in as a child.   They both have fun new bedding too.

Abby isn't feeling well today so J decided to try her bed out.

Thursday, March 12, 2009

23 Weeks

We have entered our 23rd week of pregnancy.

It's a week we've been anticipating, dreading and celebrating.  Glad to have made it this far and yet feeling as though we are holding our breath for this week to pass without incident.

I find myself painfully aware of each day our new baby is developing, but also trying to put the worry out of my mind.  The Lord has graciously given our baby good health and he continues to grow and thrive.

It's difficult to not dwell on past memories of Abby's early NICU days, remembering what she looked like, smelled like and how fragile her little life was at this stage of development.  What perfect features, soft dark hair, and delicate eye lashes she had.  How much I wanted to put her back; back where she was safe and protected.

Watching Josiah gives us hope.  I remember celebrating our 24th, 25th, 26th weeks and beyond with him, consumed by the joy that each week brought us closer to having a healthy baby...  Knowing exactly what babies look like at each stage, and hoping to never see a micro preemie again.

Now that we are at this critical point in our pregnancy I am very aware of every discomfort and contraction.  At my OB appointment this past Monday my doctor did some ultrasounds and reassured me that the contractions I have been feeling were not changing anything, and that the bleeding she saw before has clotted off and looks improved!  The baby has gotten bigger since our last scan and was very active!

She gave me some Procardia to take when I have contractions.  It makes me feel very light headed and "head-achy"... but it works.  Now we just need to be extra mindful of preterm labor signs.

Thank you to those who have been and still are praying for us.  We covet them, especially this week as we look forward to making the 24 week mark.

Wednesday, March 4, 2009

Snow Day