Lamictal dosing

This past year we have been really hopeful to start decreasing one of Abby's seizure medications (she's on 3), now that she has the VNS.  We started slowly weaning her off of the Lamictal this past Spring.  Then she started school in August and couldn't stay healthy.

During one of her long seizures our doctor told us to bump her dose back up.

Now that she is no longer in school and somewhat isolated from childhood germs we are trying to decrease her Lamictal again.  The main concern of her neurologist is that this move could increase her risk of more prolonged seizures.  From what we have experienced, Abby has terribly long seizures when she is feverish no matter what medication she is taking.

In light of this, we are anxious to clear her system at least a tiny bit from all the heavy medication she is on.  The VNS is definitely working better then we had hoped.  She no longer has myoclonic seizures and is having fewer tonic clonic (grand mal) seizures now that she is staying healthy.

Please pray with us during this change in medication.  The past few days Abby has been starting to show signs that her body isn't liking the decrease.  Last night she was up till past 11 pm tossing and acting agitated in her bed.  We think she is having additional seizures that are harder to observe, as she occasionally calls out with an eery tone and looks a little scared.  

We've decided to slow down the schedule of weaning this drug.  Hopefully this will give her system  more time to adjust.

Josiah is getting really good at following directions from his mom who is often out of commission on the couch.  He has learned to help Abby sit up in her new "Bumbo" type chair.  He gives her pats when she is upset, or if she is working hard at a task.  I'm really proud of him.

He has also started to enjoy "laying on the couch" with mommy.  I asked him last night if he would sing me a song while we snuggled.  He thought for a minute and sang me "rock-a-bye baby," almost word for word.  I didn't even know he knew that song.  Then he jumped up and belted out "Rescue Me" from one of our Selah albums. (can you tell we love this group?)  He knows almost all those words too.  It was pretty cute. That moment created my biggest smile for the day.

Job side Family picture at the Younger's

Thankfulness

Although Thanksgiving has officially merged into the Christmas season, I find myself heavily impacted by the reminder of all the things I am truly thankful for.

As a mother, memories of the past remain vivid and hopes for our future continue to grow.  This year we have a new reason to rejoice!  Some days I have to remind myself that in less than 7 months we will have a new little person to love, and seeing him or her will make all these weeks of "the stomach bug" worth while!

I am thankful:

For my family.

For my precious munchkins.

For a husband who is there when I need him!

For a sister who I can share my heart with.

For parents who love our Lord Jesus.

For our preemie experience that changed us forever.

For music that touches my soul.

For simple moments watching a sun set.

For quiet answers to my prayers.

Music has always had a unique way of reaching into my spirit and helping me see what the Lord has been trying to tell me.

I'd like to share the lyrics to a song that hit me this past week as we were driving and I was feeling especially sick.

(I found the song on YouTube so you can listen to it.  I still haven't figured out how to post a single song on the blog for sharing... let me know if any of you knows how.)  

Before the Throne of God Above

-Selah

Before the throne of God above

I have a strong and perfect plea.

A great high priest whose name is love,

Who ever lives and pleads for me.

My name is graven on His hands,

My name is written on His heart.

I know that while in heaven He stands,

No tongue can bid me thence depart.

When Satan tempts me to despair,

And tells me of the guilt within,

Upward I look and see Him there

Who made an end of all my sin.

Because the sinless savior died

My sinful soul is counted free.

For God the just is satisfied

To look on Him and pardon me.

Behold Him there the risen Lamb,

My perfect spotless righteousness,

The great unchangeable I AM,

King of glory and of grace,

One in Himself I cannot die.

My soul is purchased by His blood,

My life is hid with Christ on high,

With Christ my saviour and my God!

 

Coming Soon...Baby #3

Our new baby is due on or before July 5th, 2009.

Abby and Josiah are excited, we think.  Josiah likes to talk about the baby and kisses my tummy a few times a day.

We are about 2 months along, and looking forward to the weeks when I won't feel sick!  

Because of my unexpected early labor and delivery with Abby there will be several interventions that will be part of this journey... much like my pregnancy with Josiah.

We are earnestly praying for a smooth pregnancy and Full Term Baby!!

Toddler quotes

Experiencing the world with an inquisitive 2 year old is just fun!  Josiah has started a new phase... or I should say, a new phrase.

"Why?"

Every comment is followed by a "why?".  Why do I have to, why can't I, why won't you???  It's been pretty funny so far, but is really stretching our conversations to include many lengthy explanations.  I can now see the reason parents reply with a "Because I said so."

The other day he looked at me with a sweet little grin and asked, "Mommy, are you married"?  I told him that I was married to daddy!  He then took my face in his hands and announced, "no mommy, you're married to ME"!   

I didn't know whether to laugh at the funniness of his statement or cry from the sweetness.  That was a true mommy moment that I will never take for granted.

Abby has started PT with our local UCP chapter in Huntsville and has been challenged to a treadmill race.  It's actually only about a 0.5 mph stroll, but for her I'm sure it feels like she's climbed a mountain!  

It's a very neat contraption that she gets hooked into.  Our therapist is very capable and quick at getting her gear all connected.  Then she sits behind Abby and guides/manipulates her legs to complete a full stride with each step.  Patrick went with us today to observe and we both enjoyed getting to see Abby "standing" up straight and taking steps... even if it was with a lot of assistance.  She really looked like a 5 year old.

It is surprising to see what a champ she is in this new set up, holding her head up the whole time.  There is a little hair pulling and some moaning to protest, but for the most part I think it must feel good.  Step by step the therapist can feel her legs loosening and can actually tell that Abby is making effort to move her legs by the end.

Abby has been healthy for these past several weeks being at home.  I heard RSV is running rampant already in our area, so I'm relieved to have a better chance of dodging it this time.

Her seizures have improved too... of course mostly due to no illnesses!  The last 3-4 weeks she has averaged about 2-5 in a WEEK!  This is pretty good.  

Although today she has had 11 so far.  We are hoping this doesn't mean sickness is coming.

(scratch that.  She has a low grade temp now, 100.1)

She has been having full afternoons of fussing, moaning, arching and full on tantrums lately too.  It's difficult to describe, but it seems like it must be GI related.  Since starting the J-feeds she has developed some different symptoms.  Much like her reflux behavior, it seems to send her into intense moments (hours) of discomfort.  

I could go into more detail about what this looks like, how we treat it and what seems to help... but not today.

I'm really trying to lay it all down at the foot of our Heavenly Father, who is the only One knowing Abby's struggles intimately.  

We appreciate your prayers for Abby, especially with this issue.  After this past year we feel 'tested out'.  The GI doc seems to be done exploring reasons, so we seem stuck.  But I know this is where the Lord works best in me.  Stuck, discouraged, tired and without answers.

Waiting for Him to speak or move... or Both.

Home Bound

We've started another new chapter to our family journey.  Now that Abby is officially considered a "home bound" student, our schedule is about to change.

As we wait for our turn to see the Deafblind team at Perkins School for the Blind, we are trying to maintain a daily routine of experiences for Abby, hoping that we will be able to further our communication with her.  The school notified us that they have received our completed, and very thick, packet of medical records, IEP's, progress reports and other necessary forms to begin the process of receiving a comprehensive Deafblind evaluation.

For those who aren't familiar with Perkins, you might recognize it from the story of Helen Keller.  The girl who defied all odds and overcame her dark, silent world with the help of a special teacher from this school for the blind.  Helen learned to use sign language and eventually went on to study at a University where she learned several more languages, verbally spoke in front of large audiences, wrote her own story and inspired people everywhere with her tenacity!   All this before the age of hearing aids, cochlear implants, and other useful technology that we have now.

We are really looking forward to our trip to Perkins.  Their Deafblind program is the best in the world (to our knowledge) and just the idea of taking Abby to see them sparks hope in us.

  They will perform a complete evaluation of Abby including cognitive, behavioral, auditory, visual and many others.  These people will help us develop an IEP that we can use to set realistic educational goals for our girl.  We anticipate after leaving their campus that our family will be equipped with knowledge, ideas, encouragement and hope that we can help Abby come out of her dark world.

So, I thought you might like to see what a typical day looks like here.  

Get up, dressed, meds, orthotics.  Gait trainer- 30 min.  Bean bag to rest- 10 min.  Connect feeding bag.  Music with movement.  

(Using both hands to manipulate ball- Huge for Abby!)

Sitting in the Rifton chair for hands on activities- vibration switch toys, play doh, textured objects.  Reading while using a braille book- guiding her fingers across the bumpy pages.  Swing time- vestibular stimulation.  Tummy time- development of trunk strength.  High chair time- oral motor skills, swallowing practice. Out side time- going for walks outside in the brisk air.  Feeling leaves, grass, sticks.

Meds at lunch time.  Down for short nap.  Afternoon- more of the same.

(Abby in her Rifton chair.  We love it!)

These are the days we are at home.  Mondays are feeding therapy days.  Tuesdays she will receive Speech therapy at the house.  We are waiting to schedule PT and OT for weekly visits as well.

This Thursday we are going to UCP for an initial PT evaluation!  To supplement the services her school provides, we will be taking her to UCP for additional services... not sure how often yet.

Josiah is enjoying taking part in these activities too.  He pushes Abby's gait trainer, and brings her toys to feel.  Today he got out our pots and spoons and "cooked" us lunch on his stove (a paper stove, drawn with crayon)

It will be helpful to have professional input on what our time with Abby should look like each day.  I certainly don't pretend to know.  All that we've learned have been from reading about Deafblindness and the wonderful developmentalist we saw over a year ago, Christine Roman.  Her knowledge and suggestions have inspired much of our activities.

We appreciate any prayers during this time of transition.  I absolutely love having Abby home with us, but it does mean no-more-frivolous-outings.  Most of our trips out have a very specific purpose usually surrounding a doctor's appointment... of which she has plenty!

(Cow.  Josiah's best buddy)

"Everything has its wonders, even darkness and silence, and I learn whatever state I am in, therin to be content"

Helen Keller

US blind & deaf educator (1880-1968)

Baby Jack!

Our gorgeous nephew and tiny cousin has arrived!  To our surprise, Jack Campbell Younger was born early Thursday morning, 10-16-08, at 3:44 am.  

I had the amazing privilege of being present for his birth... and what a precious moment it was.  My best friend (other than Patrick) and wonderful sister was the bravest woman I had ever seen!

Jack weighed 6lb 7oz and was 20 inches long.  I could see resemblance's of both his sisters, but all in all, he is his own little man.  And a darling one at that!!

Check out Christy's blog for a great video, and Lee's for more photos!

Congratulations sweet family!  Can't wait to see you again.

Aunt Carolyn's visit and more...

Whew.  I am realizing how far behind I have gotten on the postings.  So much excitement lately.

First off, Patrick's Aunt Carolyn came to visit us a few weekends ago.  We always enjoy her company and the kids think of her as another special Grandma!  

She came bearing gifts too!  Amazing little Christmas outfits for both kids that she lovingly made herself!  They are beautiful!!  Such a touching gift.

Thanks Carolyn!

She gave me a starter course in smocking which was fun.  I can see how time consuming it would be...  but the results are so cute.

Then we took the kids to see Veggie Tales Live!! 

 These creatures have become some of Josiah's favorites.  We listen to the cd in the van and watch the different stories at home too.  He has memorized many of the songs and will be glad to sing them for anyone who asks!  I have to say that I love hearing him singing in the van, especially when he belts out "God is so good, God is so good, God is so good, He's so good to Abby and me."  Talk about melting my heart!

So we thought he would enjoy seeing them in real life.  The show itself was visually a little over stimulating I think, and some of the music we didn't recognize.  But when they sang some of his favorites, I could see his eyes light up and a surprised smile creep across his face!

Abby wasn't too interested.  The music was very loud and the talking was too.  She fell asleep.  It had been a busy day already so she was pretty tired.

I probably enjoyed it most of all.