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.

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

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.

Happy Birthday Patty, my wife and best friend!

Today is Patty's Birthday! First let me be very clear, I know her password and she does not know of this escapade to post about her birthday.

Happy Birthday Paba and here goes!

Last night as we were visiting with her dad, (he stopped by on his way back to China) he reminisced that the day Patty was born was one of the best days of his life. He did say that attaching a pink bow to his daughters head on her soft spot was not very comfortable and promptly removed upon exiting the Portland, OR. hosp many years ago.

25 things about Patty you may not know...

1 - She is an extremly hard worker, we have painted houses, built decks, rebuilt carburetors (2 months after Josiah was born), rebuilt an engine

2 - Excellent at rapelling and belaying climbers

3 - Althetic: Fierce at soccer (maybe to impress me, any thoughts from her teammates?), good swimmer, can snow ski well though she has only done it once, goes off rope swings...

4 - Creative: she has made baby blankets, scrapbooks, woodburning verses as gifts

5 - Talented wood worker: furniture

6 - She can put up crown moulding

7 - Patient: worked for years as a nurse while I finished school, married to me, has a 2-year old and a deafblind child.

8 - She loves Chick-Fil-A cookies and cream milkshakes

9 - Excellent cook: we had chinese food 4-5 nights a week during the early years of our marriage. I could not cook and she mainly knew chinese dishes.

10 - She is fluent in chinese

11 - She is a loving, protective and committed mom: When Abby was born she quit her job and spent 6 months in the NICU. She has a special way with Abby.

12 - Smart: she has a bachelors degree in nursing and remembers every date for Abby's surgeries (13 total) and procedures as well as all the medicine she has ever taken.

13 - She chose me and our kids over her career as a nurse

14 - She gets embarassed when I call her my trophy wife, which she is.

15 - She is very,very beautiful - obviously.

16 - She gave me a journal - Seriously, the entire year we were engaged she wrote me a letter every day in 4 volumes.

17 - She recently competed in the swimming leg of a triathlon

18 - She encourages me to buy motorcycles and other guy toys.

19 - She is my biggest cheerleader and best friend

20 - She can and has completly exchanged the furniture in two bedrooms all alone.

21 - She loves Thai and Vietnamese food

22 - She is passionate about saving the life of babies

23 - I am still her best friend after nearly 8 years of marriage and 3 dating - we have never broken up

24 - Loves to watch movies with me

25 - She misses Hummer every day

This is only the beginning of a list of who Patty is and why I love her so much. She has made me a very rich man indeed!

"A wife of noble character who can find? She is worth far more than rubies." - Proverbs 31:10