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