Wednesday, December 31, 2008

Merry Christmas!

A few pictures...

Our Family
   Aunt Christy and baby Jack!


 Aunt Connie and Future Uncle Matt!

Our Cutie!

Uncle Bill and Abby

Cousin Anna and Siah

Cousin Norah and Siah

Josiah at bat

Abby and Mommy

Josiah and Cousin Maddie

GiGai and Abby

Tuesday, December 16, 2008

various updates

New Baby update:

  These feet represent what our baby's feet look like at this point.  (obviously not real picture of our baby)

I had my 11 week OB appointment yesterday and got to hear the baby's heart beat through a doppler for the first time.  
Because my pregnancies are considered high risk I have had an ultrasound every 2 weeks so far and have gotten to see our baby grow!  I was a little bummed I didn't get a new picture yesterday, but thought I'd post this "look-a-like" to give you an idea of where he/she is in development.

The baby's heart beat was strong and wonderful to hear.

The plan for this pregnancy is to continue bi-weekly check ups, most of which will include an ultrasound to make sure the "baby house" is functioning as it should.

We are scheduled to have my cerclage procedure done on January 9th.  At this point I will be 14 weeks along.  Although this procedure, like any other, does carry some risk we feel that the potential benefits for me out way those risks.  
We had the option to skip the cerclage and just take a watch and see approach.  After much thought and prayer neither of us are comfortable with this plan and would rather do everything possible to avoid a prematurity surprise.  Looking at my pregnancy with Josiah and how well things went with the cerclage and p17 injections, we have opted to go the same route and take advantage of all the tricks available to keep this baby in as long as possible!

Our doctor has been very supportive and agrees with our plan.  She doesn't anticipate that I will need to be on full best rest at any point during our journey, but she has recommended a "modified bed rest" approach.  I will continue doing what I need to do to care for Abby and Josiah and nothing more.  She said this includes taking Abby to therapy!  

Of course at any point this plan could change, but we are praying for the Lord's mercy and strength as we take each day literally one moment at a time.

Because I have had two previous c-sections this baby will come out the same way.  Although I am really disappointed that it has to be this way, I've come to terms with it and am actually looking forward to having my first c-section without having to go through an exhausting labor!  I might even feel human when I meet this little one.  

My nauseating fog still continues.  Thankfully it is not as severe as my other two pregnancies.  I am really looking forward to feeling whole again, instead of the horrible, green, fraction of myself that I see in the mirror.  Zofran has kept me functioning (marginally), and Phenergan has whisked me off into a coma state for some sleepy relief as needed.  

Soon enough I will be large and clear-headed.

Abby is doing well these days, staying busy with PT, OT, Speech, Feeding and Music therapies in addition to extra PT at UCP.  The sessions on the treadmill have helped her make progress in several areas.  We've noticed more rolling, more lunging forward when in a sitting position, more stepping action in the gait trainer and better range of motion overall!  We are so thrilled. 

 Her therapist at UCP has been doing scar manipulation, or stretching/massaging her multiple abdominal scars.  She says this will improve her range of motion and free up her tissues to stretch more easily.  It is very interesting to watch.

(Abby's B-day 9/03/08)

Her seizures have stabalized again after a few strange days and nights of irritability and myoclonic seizures.  We slowed her medication decrease schedule to allow more time for her to adjust.  It seems to have helped.


The glaucoma issue is also stable for now.  Her last eye pressure measurements were in the low 20's.  The doc would like to see them decrease into the teens but said he could live with her measurements for a while.  We don't see him again for a few months, but unfortunately he will no longer be coming to Huntsville for clinics... we will have to drive to Birmingham.  

A few nights ago I was putting Josiah to bed and he asked me to tell him about the Christmas story again.  As I was recapping what we had just read about baby Jesus, he stopped me and pointed to Abby.  Then he said, "Jesus holds Abby like a little baby."  With the sweetest little smile he signed "baby" and said, "Jesus holds me like a baby too, doesn't he momma."

I couldn't help the tears as I envisioned our powerful Savior holding my children in His arms, loving and protecting them.  I remember that image as being the most comforting to think about when Abby was tiny and sick lying alone in the NICU.  We couldn't hold her, but knowing God WAS brought peace and comfort to my heart.  When that thought entered my mind it was the first moment of full surrender.

Abby and Josiah both bring these precious reminders to me daily.  

Children truly are a blessing from the Lord!

Friday, December 5, 2008

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

Tuesday, December 2, 2008


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

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!


Friday, November 21, 2008

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!!

Tuesday, November 11, 2008

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.


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.

Tuesday, October 28, 2008

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"

US blind & deaf educator (1880-1968)

Monday, October 20, 2008

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.

Thursday, October 2, 2008

Back to the ER...

Yesterday started out as one of the most stressful we've had in a while.  Abby had a fever of 103.4 and was acting strange, and somehow I knew it would only get worse.  I dosed her up with some Motrin and got her into a comfy position on the couch where she fell promptly asleep.

After grabbing a quick shower, I ran to check on Abby to see if she was still sleeping.  Instead I found her seizing on the couch.  I really only glanced at her before running to get her emergency medicine.  I gave it and then ran around trying to get ready to head to the hospital.  Poor Josiah just sat and watched me, probably thinking I had really lost it this time.

As the minutes melted away (8 of them) I realized I hadn't called her neurologist.  I told the nurse what was happening and I could hear slight panic in her voice as she instructed me to give Abby a 2nd dose of Diastat and to call 911.  At hearing this my stomach dropped and I don't really remember the next several minutes as I waited for the ambulance to arrive.  

Until yesterday we've managed to avoid using an ambulance to get Abby to the ER for seizures.  I think the Lord arranged it so that Patrick was usually close by or friends were near to help with Josiah.  Because her seizure was only getting worse, even after 2 doses of Diastat, I have to admit that I was a tiny bit relieved to see the trucks driving up.

They gave her oxygen and more Diastat in the ambulance as we sped through traffic and red lights.  I couldn't help but feel very overwhelmed remembering the other times Abby and I have been passengers together in an ambulance.

Once we arrived at the ER it was nice to be rushed to a room where a large team of people were standing ready.  They got her IV on the first stick and gave her more meds.  She seized for a total of 1 hour.  One terrible hour.

The rest of the day was spent getting lab results, a chest x-ray, urinalysis and CT scan of her brain.  All checked out ok except for a questionable chest x-ray.  Her chest films are rarely clear and typically are found to have some spots of "something".  The radiologist couldn't say for sure what he was looking at, but noted it could be a pneumonia developing or maybe spots of atelectasis (collapsed air sacs) from not breathing well during the seizure.  Just to be safe the doctor gave her antibiotics through her IV and some for home too.

Thankfully, the doctor was amazed to find her blood gases to be ok, considering the length of her seizure.  She kept her o2 sats high even after removing the oxygen mask.  The main problem was her high fever, which crept up to 104.2.  She remained agitated until we brought her home where she could get some real rest.

Today she is mostly out of it, but coughing and restless when she is awake.  I can tell in her eyes that she feels pretty lousy and her temp is around 102.  We are just glad to be at home.

After 7 weeks of illness and too many seizures to want to mention, we have prayerfully decided that she will NOT be returning to school.  Although we feel that it has been good for Abby to have the interaction with other children; to hear them talking, singing and laughing around her; it is clear that her health must be our #1 priority. The therapy has been great too as it has allowed our family be together at home more.

Fortunately we will be meeting to change her IEP soon to arrange for homebound services again.  We are hopeful she will receive some therapy each week at home, along with meetings with the teacher for the deaf.  This is the part we really need help with.  Communication with Abby is our biggest, most discouraging challenge.  We want to connect with our little girl and give her a way to express her heart and mind with us.  

Our hope remains in the promise that our Lord created Abby and has given her as a gift to us.  His purposes for her life are far reaching and beyond our comprehension at times.  But we are certain that He will provide all that she needs, and sustain our family through difficult days.  The daily trusting is my personal challenge.  

"Show me your ways, O Lord, teach me your paths;
Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. 
Remember, O Lord, your great mercy and love, for they are from of old."

Psalm 25:4-6

Monday, September 29, 2008

A Special Visitor

My parents have lived in China for over 20 years now!  It's hard to believe until I break it down into all of my sub-memories of growing up, and then it seems like a life time ago that I was riding my bike to Chinese school with my red bandana on (only some of you will understand this part!).

Mom and Dad make trips back to the US periodically, some for business some for family time.  We had a special treat before my birthday when Dad extended a business trip long enough to visit with his girls!!

It was so fun to get to catch up on life in person, face to face.  The kids enjoyed seeing "Pipai" again too.