Going ahead with the gold weight

Posted by tom | Jul 8, 2009

Eden's facial nerve surgeon called to discuss with us his recommendation of a gold weight in her not fully functioning eyelid to enable her to close it fully. We're exploring the steps necessary to go ahead with the surgery.

Pray for discernment, patience, and the ability to calendar well as we have conversations with other physicians involved in Eden's care, explore insurance coverage, and time our trip to Pittsburgh (where the facial nerve surgeon is located).  Pray for this procedure to truly improve Eden's ability to use her eyes without creating unexpected, adverse effects.

Facial Nerve Therapy Visit

Posted by tom | Jun 9, 2009

Eden kept active and on her feet throughout our visit to 'da Burgh.  Praise God!

Our trip wrapped up with Eden's facial nerve therapy appointment.  Her time in the office went long,* but well. As a result of the visit, we have some exercises/practices to stimulate the use of her facial muscles, including the closing of her eyelid.  Still considering the recommendation of a 'gold weight' in her eyelid.  Anyone have experience with this form of treatment? (More)

Update: Eden's adenoidectomy went well

Posted by tom | May 1, 2009
Eden's home chatting and eating breakfast (i.e., oatmeal).  Pray for her mobility and sense of space, especially when she's around Lily.  Note: due to her medication, Eden's even more wobbly. Pray for her to rest well this afternoon/evening.

Eden's New Bike

Posted by theresa | Apr 4, 2009
This week Eden received her new bike.  It's a therapeutic tricycle called an AmTryke provided by AmBucs (http://www.ambucs.org/).  Ambucs provides these bikes at little or no cost to qualifying individuals who are not able to operate traditional bicycles.  Eden's PT measured her and selected the types of modifications she would need on the bike.  We sent in the application and 3 months later we have a brand new shiny red bike.  It's pedaled hank-crank style and with the feet.  The chain connects both so you can't pedal one way and not the other.  The seat that's on it now is a saddle seat with an adjustable back.  There are two velcro straps that go around Eden's torso to keep her from falling off the seat.  The pedals are like platforms for her feet also with velcro straps to hold her feet on.  It came with an additional bucket style seat that I haven't even taken out of the box yet.  It's a molded seat with a back.  The frame adjust considerably to be closer or further away from the handlebars.  And the seat adjusts up and down.  I think the handlebars even tilt in 3 positions but I haven't tried that yet.  It has pneumatic wheels and one rear wheel has a brake like you find on wheelchairs to keep the bike from moving when she gets on/off.
 
And most importantly, what does Eden think of her new bike?  She likes it a lot!  The day we got it was warm and sunny and she and I spent some time trying it out after lunch.  It's even hefty enough for me to ride it (though it is way too small).  She enjoyed "helping" me to ride as much as she enjoyed riding it.  It's a heavy bike and she's not able to power it all by herself.  Grandma's and Grandpa's driveway where we ride it has a slight grade -- just enough for Eden to get the feel for operating the bike without needing to "muscle it."  And when I push her down the driveway she goes fast which she thinks is grand.  She has some trouble holding on to the handlebar with her right hand ("Righty") because she doesn't yet have the strength to hold on tight enough.  But this exercise should help her to build up that strength. We're looking forward to getting a lot of mileage out of this bike this summer.  It's a bit bulky for transporting, but on occasion we may take it to the park.  And when Eden finally outgrows it we can give it back to AmBucs for them to recycle it into a bike for another eager recipient.

Eden's on the move

Posted by theresa | Mar 14, 2009

Last night Eden walked to and from my parents' house unassisted and without falling. After I put her coat on her to go over there she wanted to go out and I said she could get started. I figured she'd get as far as the porch steps by the time I wrapped Lily in a blanket and walked out the door myself. Well, when I walked out the door I looked around and didn't see her! She was all the way over to their driveway, heading to their backdoor. I caught up with her at the door so I didn't touch her at all. I can't say for certain that she didn't fall at all on the way over b/c she was halfway there by the time I saw her and I couldn't quite figure out what she was telling me when I asked her if she fell. On the way home, she actually opened their front storm door and stepped down the step by herself. And she informed me in no uncertain terms that she did not want any help to go home. I suggested she walk in the grass rather than down the steps on the front walk since there's nothing to hold onto on the steps. She took the grass and crossed the driveway and up the hill between our two cars and all the way into our house without me touching her. I stood behind her going up the hill and she wobbled, but managed to regain her balance. She even opened the storm door, with Righty, and stepped though it. Amazing!

In other news from her check-up: Dr. Carlson thinks the tube in her L ear (the one that's most recently been infected) is laying in the ear canal (meaning, it's not functioning b/c it fell out of the eardrum). We go to the ENT on Monday so we'll find out for sure if it did and what to do about it. It was in place on Tuesday when we went to the doctor. Eden is 40 lbs and 40 inches tall. 50% for height and 90% for weight, which is consistent with a year ago. She's one solid kid b/c she's not "fat" in the least. Puppy came along to the doctor today. When asked what his name was she said "Jay dog".

Eden's tooling around

Posted by tom | Feb 11, 2009
It's hard to keep up with Eden as she roams around and get's into things.  Great to witness the development and a great stretch upon our sanctification. ... Pray for the Father to fill us w/the fruit of the Spirit and that we would become more Christ-like.  Almost since the new year began, our family's been regularly praying for 'patience, gentleness, and self-control.' 

Eden in the new year

Posted by tom | Jan 11, 2009

Continue to pray for The Gift of Spring in Eden's Life.  As our friends/family love to mention to us, Eden has continued to get around better and doesn't care if she runs into something or falls down.  For the most part Eden gets up and keeps on going, trying to keep up with whatever everyone else is doing and singing along the way.*  She even navigated some ice this morning, almost successfully ... then pressed on Smile

Earlier we had mentioned Eden's vision 'possibly' slightly improved, but our most recent visit did not confirm this direction.  Please pray that when we go back to the eye doctor in April that he sees some improvement.  

Eden's made some progress in dressing herself.  She's limited in this area because she lacks strength and agility in her right hand.  

*Note:  Eden loves to sing

the ABCs
It's Raining It's Pouring as a lead into The Wise Man Built His House Upon the Rock -- love this!
Jacob's Ladder
O My Darling (Clementine)
Rocka My Soul in the Bosom of Abraham (but she's on a first name basis w/Abraham, calling him Abe-y)

The Gift of Spring in Eden's Life

Posted by tom | Dec 15, 2008

We rejoice in God's gifts of healing and determination to Eden.  It has been a great encouragement at various extended family Christmas gatherings over the past weekend to hear again and again the surprise at Eden's strong participation in the social time (particularly walking about and sharing her thoughts/songs). 

With great hope and joy, Theresa and I anticipate the end of the winter and the coming of spring in Eden's life when she will have full control of her limbs, eyes, smile, and voice.  At present, we rest in the peace that the Father is it at work in the little things and we remind ourselves to give praise for the developments which we are so easily apt to overlook, but are hard to miss by those around us.  To God be the glory! 

Eden's getting around so well

Posted by tom | Nov 6, 2008

Many people at our local congregation point out how well Eden's getting around, that's as I chase her down the hall, around the gym, or through the sanctuary.  How good and true it is!  And what a joy for our friends in the 'da Burgh, including many from Allegheny Center C&MA to see the healing in her life for which they have been praying since shortly after her birth.  

Praise God for Eden's careening without fear (maybe she'll be a running back as the bumps and bruises don't seem to bother her much at all), dancing, loud singing, and straight-up personality.  She continues to push her limits, e.g., last night she took a spill on the sanctuary stage while practicing with the 3-4 year old choir.  But no crying she makes, unlike when I dropped her off at choir. 

Pray for our family, as this coming Sunday morning will be packed morning with Eden singing in the choir, Lily Joy being dedicated to the Lord, a little reception for extended family after the baby dedication, and my facilitation of an adult elective session on How one processes the portrayal of Christmas in popular film.

Eden's vision 'possibly' slightly improved

Posted by tom | Oct 7, 2008

Not only is Eden navigating around much better by foot, but it appears that her sight has also 'possibly' slightly improved to between 20/50 and 20/60 in her 'bad' eye.  The eye doctor instructed us to move up from 2-3 hours a day to 5 hours a day with the eye patch to continue the positive direction. 

Pray for Eden's patience in wearing the eye patch.  Pray for persistance and creativity on our part, particularly on the days when she is tired and not agreeable to its presence.  We'll start in the morning while she watches Mr. Rogers DVDs ... anyone have used/spare copies of episodes, we'd love borrow and/or own some more.

Eden's wisdom

Posted by theresa | Sep 16, 2008

Here's a little ditty to file under Preschool Theology.

Eden recently learned about Adam and Eve. The same day before her nap I asked her who she would like to pray for. Her response:  Pray for Adam and Eve. Pray they don't eat the apple again.

Praise: Eden's Successful Surgery

Posted by tom | Aug 28, 2008

Dear Brothers and Sisters in Christ,

We rejoice in your standing with us in prayer for our family and by God's grace we have a good report to share with you.

Join us in praising God for a smooth Wednesday morning ear surgery for Eden. She was wobbly in the afternoon while trekking around and was up for a few hours in the middle of the night.  But she was ready to go Thursday morning, maybe a little too much for us today ;-)  Pray for us to be careful not to have water get in her ears.

Note: During the surgery, God even provided a 'perfect baby' as Lily slept, smiled, and feed without a cry the whole morning!

Shalom, Tom & Theresa

Prayer request for Eden

Posted by tom | Aug 26, 2008

Pray for a safe and quick out patient Wednesday morning ear surgery for the restoration of Eden's ear tubes.

Eden's covering more distance

Posted by tom | Aug 7, 2008

Eden's sisters and her cousins have been a great blessing to her this summer.  The other day her cousin Firas coached her the length of our first floor.  Today she was trying stairs on her own, i.e., without me holding her but right next to her, en route to playing Barbie with Hayley and Ellen.  Praise God!  Can't wait to see how far Eden can travel when we're at Camp Hebron next week for InterVarsity's Mid-Atlantic Regional Staff Conference.  Pray for Eden's continued development and that soon she will have the strength for stairs and will run with the joy of the Lord in the fall!

Finding Eden

Posted by tom | Jul 7, 2008

I spent the morning chasing Eden around the MoviEtown complex during the showing of Finding Nemo by a children's camp, thereby confirming my suspicion that Eden's NOT ready for the theatre.  Overall the theatre experience wasn't bad as Ellen and Hayley enjoyed not only watching the film (again), but also helping w/Eden.  It's such a blessing to have Ellen and Hayley help out with the little things in life, which add up even more quickly as Eden gains greater mobility. 

Pray for Theresa as she deals with a full afternoon/week of activities, particularly as I have a number of appointments this week.

Eden's taking steps

Posted by tom | Jun 15, 2008
As we prepare to bring Baby Lily Joy home today, Eden reminds me she's a big girl.  She most definately is and it is a great joy to see her cross short distances unassisted!  We can't wait to see Eden run and play, but hope that she focuses on where she is going, something which she doesn't do when navigating the halls with her walker.  Last night Eden played with her baby dolls endlessly and she added another to her bedside assembly.  From what we saw in the hospital yesterday, we'll have to fend off a would-be three year old mommy.  Are there any childcare training classes for her age?

Eden's funny phrases

Posted by tom | May 26, 2008

No Way, Jose!

I'm not sure why she latched on to this phrase in particular, but we hear it multiple times a day and it always makes me chuckle. Sometimes it's followed by sleepyhead which in Edenspeak sounds like PeePee head. So please don't be offended if you're on the receiving end of that one. I'd really like to come up with a snappy response; something in the vane of See you later, alligator. After a while, crocodile. If you have a suggestion let me know. You betcha, Juanita is the best I've come up with so far. Sometimes she'll yell No way, Jose! For no reason at all, like she did recently in the lobby at church when a program was going on in the sanctuary. She followed that by singing Ring Around the Rosy at the top of her lungs.

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Baby Eden becomes a Big Girl

Posted by tom | May 21, 2008

We're going to have to rename this thread shortly as over the past two weeks Baby Eden has become a Big Girl.  Eden reminds us this time after time as she's learning to walk to the van while holding mom or dad's hand, to travel down the hall from the kitchen to her bedroom, to go down the basement steps, to sit in her new chair at the table during meals, and to run around our local assembly's lobby area with her walker.

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Funny Eden

Posted by theresa | Apr 21, 2008

Eden says the funniest things sometimes.  This week she's been telling me that the bathroom is sad.  "Why is the bathroom sad?" I ask.  "Because he's sick and has to go the hospital!"  Of course!  Silly Mommy.  She's in a hospital obsession phase right now.

The other day at lunch a fly was buzzing around us.  She kept shooing it and telling it not to eat her food.  Then she said, "Eat your own food, fly!"

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Night 3 of Big Girl Bed

Posted by theresa | Apr 12, 2008

I knew this day would come and I've been dreading it. But it's gone remarkably better than I anticipated. A few days ago we moved Eden out of her way-too-small portacrib and into a toddler bed. Her first sleeping attempt was for naptime and after 1 hour of coaxing and discipline, she fell asleep in her bed. I kept the crib in her room to use as a back-up. At one point I told her she was going back to her crib, and actually put her in there, but the pitiful plea she gave me to peep in mah big gurl bed! was so heart-wrenching I relented. The first night she slept pretty well in her bed. I think I only had to go in to her room once, when she turned on her light and called for Mommy at 4:30am, announcing to me, It's time to get up. Oh no, I responded, It's not time to get up. She actually went back to sleep until the more reasonable hour of 7am.

Last night was a little rougher. Eden required 3-4 visits in the middle of the night. She's taken the admonition to stay in your bed! so seriously that if something falls out of her bed (cup, blanket, doll) she won't get out of bed to pick it up. We're still trying to work that one out. She also fell out of bed several times last night. She didn't do that at all the first two times she slept in the bed, so I don't know what that's all about. We haven't yet located the little guards that came with the bed. We're also trying to convince her that if she falls out of bed she can put herself back into bed without help.

Today she fell asleep for her nap after an hour of protesting. I finally had to wake her at 5pm and she was precariously close to the edge of her bed, head pointed towards the floor. I literally caught her when I woke her up or she would have slid head first into the floor. For bedtime tonight she settled without any visits from mom! Hallelujah for small miracles! I guess next step will be to move the crib out of her room and into the new baby's room. But it still comes in handy for time-outs... [Theresa, 4/11/2008 10:40:17 PM]

The latest on Eden

Posted by theresa | Mar 24, 2008

Tom informed me that it's time for another Eden update, so here's what the little cutie pie is up to.

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Eden's 1st Day of Preschool

Posted by theresa | Feb 26, 2008

Eden had a great first day of preschool, so her teacher told me. She didn't have any anxiety about getting dropped off. She started to play with a dollhouse right away and was fine. They had gym today and she got to play basketball. Not sure what that was like, but I was told she made a basket. Her dad will be proud.

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Baby Eden's getting big & going to school

Posted by theresa | Feb 25, 2008

Many people have commented over the year at how big Eden looks every time they see her. She never seemed huge to me (Theresa) and has always been average for her age. Today she went to the doctor for her 3 yr. old check up and here are the official stats:

Height: 37 in.
Weight: 35.5 lbs (a few weeks ago their scale put her at 38 lbs, so I think their scale is a little fluky)

These stats put her in the 50th percentile for height and the ... 90th percentile for weight! So for everyone who thought she looked tall, she's not. I think we're just used to seeing her crawl and when she's standing she looks so much bigger. And to look at her you wouldn't say she's pudgy, so I think she must have a lot of lead in her body or something.

Tomorrow should be her first day of preschool, weather permitting. More on that later.

Happy Birthday Eden!

Posted by tom | Feb 22, 2008

February 22 was a full day with Eden turning 3, the twins being off school due to the snow, and lots of cooking.  I'll have Theresa fill you in on the details, but I didn't want to go to bed w/o offering praise to God for the gift of Eden's life, health, and continued development (Note:  Yesterday, Eden walked across the living room for the first time).  God the Father is so good, we know His Presence through the testimony of the creation, the incarnate Body of Christ, the powerful indwelling of the Spirit, and the clarity of His Word. 

What a joy to know we are not alone when we wake up tomorrow morning, but God is standing with us through you! 

Eden Begins Preschool on Feb 26

Posted by tom | Feb 14, 2008

Today I [Theresa] met with the IU (Intermediate Unit) to go over Eden's IEP (Individualized Education Program). Since she is turning 3 years old next week her therapy services will fall under the jurisdiction of the IU, instead of Lancaster County's Early Intervention. After much deliberation we decided to place Eden in preschool at Schreiber's Pediatric Rehabilitation Center in Roherstown.

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