Ari Lucas Stehney

Posted by tom | Dec 24, 2006

Baby Eden has a new playmate :-) Marcy just gave us a call.

Ari Lucas Stehney

Born Friday, December 22nd

7lbs., 13 oz

21 inches

He's perfect. Came home today. Waiting for the link to the pics . . .

Can't wait to visit this spring :-)

Ear infections, low sleep

Posted by tom | Dec 15, 2006
Eden has had ear infections for quite some time and has had difficulty sleeping at times (quite often she joins us in bed at 2:30pm and wakes up periodically afterward, being passed off to Grandpa Ginder around 5:15am). Her recent blood test revealed that her immuno-globin count is low. She may need her tubes taken out and have new ones. So we'll take her to the immunologist and then ear-nose-throat doctor to address these concerns on Monday. Pray for her to receiving healing. Pray for her to sleep through the night, she just woke up about 10 minutes ago and is crying.

Eden's MRI results, 11/13/06

Posted by tom | Nov 14, 2006

On Monday, 11/13/06, Eden had a follow-up MRI at Hershey Med. The procedure went very well (much faster than at Children's in Pgh), and the results were consistent with what we had seen last time. There is some sort of vascular malformation in her brainstem, but the exact determination of what kind of malformation is still not evident. In a sense, that doesn't really matter, however, because her neurological deficits continue to improve. Our course of action at this point is to do nothing. In fact, our doctor believes that we don't even need to continue to monitor Eden with MRIs. The reality is that we will know if the area bleeds again b/c her symptoms will suddenly worsen. Our doctor will consult with other vascular specialists to get their opinions. And we'll visit the doctor in another 6 months.

Eden tolerated the sedation very well--just the expected grogginess for the next few hours and a low fever in the evening. This morning she is back to her active, chipper self.

Off to MRI

Posted by tom | Nov 13, 2006

Heading out the door to spend a day at Hershey Medical Center. Eden's MRI will be in the morning, later in the day we'll met Dr. Mark Dias, the neurosurgeon who is overseeing her care, to receive his reading of the results. Intercede for the results to testify to Father's continued healing of Eden and clarity for our role in caring for her, note: see http://groshlink.net/archives/2006/05/26/edens_mri_good_report Pray for the Father to grant Theresa and myself quick orientation to this new facility, patience from the Holy Spirit with the potentially long wait (MRI in the morning, appointment scheduled for 4pm), and discernment regarding next steps shaped by His Word.

Eden is a mover and a shaker!

Posted by tom | Nov 1, 2006
This little girl has really taken off in the last 2 weeks! She is now fairly proficient at pulling herself up at the sofa, bed and bathtub (a personal facination of hers). She also can pull to stand in her pack n play now. She now crawls on her hands and knees ("creeping" in PT jargon) more often than she belly crawls. I see more small movements in which she chooses to use her right hand (e.g. touching my face). And her vocabulary is started to expand. Common words include: car, truck, cup, Grandma/pa, mama, dada, some derivation for Hayley/Ellen, hat, sock, thank you, and bus. Most of these words sound pretty similar to "Gock", but depending on what she's pointing at when she gocks you can figure out what she's saying. Her receptive language is huge (how much she understands when spoken to). She'll follow directions such as, "give mama the sock" and when asked, will point to the appropriate location such as hair, nose, piggy-toes, foot, etc. If I mention something about her eyepatch while she's wearing it, she will immediately try to pull it off. She knows when she's doing something she shouldn't do and will look at me and laugh before she scurries off to do it. At least once a day someone in the household will exclaim, "She doesn't miss a trick!" And my grandfather likes to say "there's nothin wrong with her thinker!" (More)

She Pulled Up!

Posted by tom | Oct 16, 2006
Just a quick note by a proud Mama to say that Eden pulled herself up onto her feet at the sofa today. She won't earn a perfect 10 on the execution, but she did it :)

Cute things Eden does

Posted by tom | Oct 10, 2006

Like every proud Mama, I like to share stories of my adorable kid. She's much more adorable now that she's finally getting over 2 weeks of illness. She was so chatty and happy today--a real joy to be around . . .Eden enjoys a day watching the well digger

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Eden has had

Posted by tom | Oct 4, 2006

an ear infection, cold, fever, etc for about 2 weeks. Please pray for her recovery (and that she'll not continue waking up at 6:10am or earlier). Her next primary care physician appointment will be on October 31. Her next MRI and visit w/her neurologist (lead physician) at Hershey Medical Center will be on November 13.

10/11/06 Update: Eden is over her infection. She almost finished w/her cold. Yeah! Hopefully we're not onto the next one.

9/6/06 Eden Update

Posted by tom | Sep 7, 2006

If you've been wondering why we've stopped posting Eden updates on the blog, it's because we've gone a whole 3 months without seeing a doctor!! But, alas, we're getting back into the groove since our move (ooh, good rhyme).

Eden has recently begun Physical Therapy (PT) and Occupational Therapy(OT) . . .

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What's in the cabinet?

Posted by tom | Aug 25, 2006
After Eden's pioneering endeavors, Theresa's dad spent an evening installing door latches in the kitchen as Theresa scoured the house inserting outlet covers. Baby-proofing will take a while and when we've done our best, we'll leave for our new house which just received the appraisal go ahead. Yeah! Is there a baby-proofing package for modular homes :-)

Mobile

Posted by tom | Aug 3, 2006
Eden is doing remarkably well. She has been all over the first floor of Tom's parent's house. Tom's mom is amazed at the progress she's made since we arrived here. Eden has so much more space to roam in Tom's parent's house and more people to help her walk. Walking (with help) is her preferred activity these days. Great for her, back-breaking for us! But she's doing really well and she loves the attention of all the family which have as she bangs on the piano and opens/closes cabinets . . . what a joy to see her continued development. Theresa thinks that she's found a good pediatrician for the kids -- recommended by a friend from college who lives in the area.

Eden's therapy annual evaluation, nearly miraculous, more

Posted by tom | Jun 30, 2006

Hi All,

Thought I'd update you all on the latest things Eden's been up to, starting with her annual therapy evaluation. The organization that provides her services does this evaluation every year and it's been a year already, since we started Physcial Therapy at least. She had this yesterday. All her therapists come to our house and together put together a progress report and evaluate (using the Battelle Developmental Inventory) and write new goals for her. Here are the results for Eden at 16 months old (click below for the details) . . .

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Eden's MRI: Good Report!

Posted by tom | May 26, 2006

Thursday's MRI witnessed to the power of God and the answering of many prayers of the people of God as the blood in Eden's brain stem area is being reabsorbed. Our physican team is confident in the diagnosis of a "cavernous malformation" (CM) which our doctor described as a leaky blood vessel. The CM itself doesn't show up on the MRI b/c it's so small, but rather it's the blood around it that you see. It's only as big as the bleed. And in Eden's case, since the blood is disappearing, it's getting smaller. This is the closest description we've found for it--not sure if it completely matches Eden's diagnosis--see http://www.angiomaalliance.org/cainfo.html All the blood present in the MRI is old and there is quantitative (and considering her growth proportionally) less blood visible than the previous MRI.

In addition, our physican team is confident in transferring her care to a neurosurgeon at Hershey Med, trained at Children's in Pittsburgh, to follow her care and address any significant developments (note: there is a 1-2% chance in a given year of a repeat bleed). Our doctor has a high level of confidence in this neurosurgeon and will assist us in acquainting him with Eden's case. And since we will most likely find other qualified specialists at Hershey to follow her eyes and ears, we will hopefully eliminate the need to travel to Children's in Philadelphia (or Pittsburgh).

As you continue to follow Eden's growth and development, please link over to http://groshlink.net/album/eden_06 to download and/or print a photo to have it on the computer (in a prayer bulletin, or the refrigerator) as you, your family, and/or your local congregation lift her up in prayer.

Rejoice w/us in the gifts given by God and responsibly applied by those whom have given Eden care over the past 15 months, in particular the our family physican and Children's lead physican for our case who have consciously offered their gifts, skills, and training to the glory of God.

Family Medical Updates from today

Posted by tom | May 23, 2006

Good report from Eden's Ear-Nose-Throat (ENT) evaluation this morning. The tubes in her ears are functioning well, fluid is not interfering w/her hearing. The ENT is for the first time saying that she may regain hearing in her left ear, because her other neurological symptoms are improving. It is possible that the auditory nerve may recover. Praise God! We meet w/our primary physican at Children's Hospital on Thursday morning, followed by an MRI. We are looking for the MRI to reveal a continued decrease of the actual size of the brain bleed.

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Eden movin' and shakin'

Posted by tom | May 19, 2006

The good news is: Eden can now commando crawl as it is called (squirm on her belly to go forward) b/c she no longer gets her right arm stuck underneath her. The bad news is: now she goes everywhere and is into everything! The other day she wiggled out to the kitchen and pulled the magnets off the refrigerator. Most parents deal with this stage much earlier, so I won't complain about the reprieve we've had. In fact, I'm not complaining at all--I'm overjoyed!

Her other new trick is to sit up on her own from a side-lying position (left side, she still can't push herself up with her right arm). It's been a big week :)

Cheers,

Theresa

P.S. from Tom: Lots of recent pics posted here. We'll try to take and post a commando crawl pic over the next couple of days. I can't take one now as I'm completing a few tasks at Panera before an appointment w/CMU alum Sam Portnoff to discuss faculty ministry. He currently serves CCO at Elmira College through North Presbyterian Church.

Eden: addressing fluid in the ear; sitting up quite well

Posted by tom | May 8, 2006

We're home from the hospital (well, Children's satellite campus, north of Pgh). All went well. Looking at Eden now you'd never suspect she had just undergone any procedure. They gave her gas to put her to sleep so she didn't even need an IV. We arrived there at 12:45 and arrived at home at 2:45. In fact, I had only been in the waiting room for 10 min. when the Dr. came in to tell me he was done. He said there was a significant amount of fluid in her left ear and a little in her right. We'll go for a hearing test in a few weeks and then see the doctor so that we can discuss the findings.

In other developments (no pun intended), Eden is sitting up by herself very well. And a couple times she managed to push into a sitting position after laying on her side. She just needed a tiny push from me. And just as exciting, yesterday she was purposefully reaching for a toy with her right hand. She was sitting on the floor and the toy was to her right and a little bit behind her. Previously she would have reached for it with her left hand, knocking herself off balance and landing on her nose. But instead she turned at the waist and reached out, shakily, with her right hand. And she did it consistently -- it wasn't an accident :-) So that was very exciting to see. I called it "a glimpse into the future".

Next up for Eden is her 15 mo. check up and her next MRI on 5/25.

Cheers to you all,

Theresa

Eden Update 04/24

Posted by tom | Apr 24, 2006

Hi All

Just wanted to update you on Eden's visit to the ENT (Ear, Nose and Throat) doctor this morning. We've been monitoring the fluid in Eden's ears--the last few times she's been there she's had fluid, but no infection. B/c the fluid can affect hearing our concern has been that she's not hearing optimally out of the right ear (the left ear is the one that doesn't hear). Today she continued to have fluid and the doctor decided it's best to put tubes in her ears to drain the fluid and prevent future buildup. Again, our concern is to maintain hearing in her right ear, but he'll tube both ears. He said it's not out of the realm of possibility that she may regain some hearing in her left ear, based on how we've observed the other cranial nerves improve over the last few months. Tubing the left ear would at least rule out fluid that could interfere with hearing. It's rare that hearing would come back, but b/c we assume the mass was causing the hearing loss by impeding the auditory nerve, if the mass shrinks or goes away, it could free up the auditory nerve to function again.

The surgery takes about 5 min. but requires anesthesia (gas). It's scheduled for May 8th. After that she'll have another hearing test and hopefully we'll get her ears "squared away" before our move.

Eden continues to make new speech sounds. She'll say "mama" when asked and can say "dada" and "deedee" but not on command. A developmentalist sees her once a month to keep on eye on her progress. She comes this week for the 2nd time.

That's the scoop. Thanks for your prayers!

Theresa

More positive reports: Opthamologist, Developmentalist

Posted by tom | Mar 26, 2006

On Friday Eden visited the opthamologist again. He didn't check her vision like I thought he was going to do today, but he's really pleased with her lid closure. It's the most improvement he's seen in her yet and it indicates that the 7th nerve function is returning. We only have to patch 30 min. a day, a difference he said between treatment and maintenance (we're in vision maintenance phase right now). And her cornea remains very healthy. He differs in opinion with the plastic surgeon concerning the gold weight. He doesn't think it's the best treatment in a child, even for aesthetics. He believes its function is for protection of the eye if the eye needs further protection and in Eden's case whatever we've been doing is working well. He wants to see her again after the next MRI and get her squared away with glasses if necessary before we move. He can help us with opthamologists at Children's in Philadelphia.

The Developmentalist came for the first time on Thursday. I wanted her opinion regarding Eden's speech and I feel encouraged after talking with her. She's really pleased with the things Eden IS doing and gave me a few simple communication exercises to try with her. She also said that speech development often mirrors fine motor development, so if there's a delay in one there's often a delay in the other. Interesting. She'll come once a month.

Eden w/cup in hand

Posted by tom | Mar 20, 2006

I (Tom) just had to share this beautiful, developmental moment . . . tonight, I ran back-and-forth from the twins taking a bath and keeping an eye on Eden. I couldn't believe Eden's ability to sit-up and take a drink herself. This is something that has only recently emerged. Praise be to God!

I find this move even more spectacular (and replicable) than the fade-away 3-pointer that enabled Northwestern State to surpass Iowa in the closing second of the game. That's not to say that the tourney has not inspired me, as my game was really on this morning, until the last match-up. But I'm finding a lot more joy in being with Eden as she, by the grace of God, makes her moves than all the ball on T.V. (and I've shared a lot of time w/Hayley and Ellen in front of the tube trying to explain the nuances of the action on court . . . they were disappointed to have Pittsburgh associated with loosing).

Eden: doctor visits this week

Posted by tom | Feb 16, 2006

Hi All,

Eden has a busy month of appts., 6 doctors plus 2-3 therapies a week. But the news is good! If you haven't seen her for a while you'll be amazed--she's so much straighter and holds her head up so well. In PT (Physical Therapy) the other day she sat by herself for 25 seconds! She's even voluntarily reached for toys with her right hand a few times.

On Tuesday she visited the plastic surgeon for another follow up visit. She had been there 3 months ago and had showed progress, meaning the impulses to her facial muscles were stronger than previously. This time the impulses were even stronger. In fact, when we got there and talked with the doctor he said it's time to put a gold weight in her eyelid (the gold weight would allow her to blink her eye, which is very important to protect her eye and keep it healthy). He sounded convinced that Eden needed that treatment now. But after hooking up the electrodes and measuring the nerve impulses he changed his mind. She has improved so much in 3 months that he's hopeful she'll be able to blink on her own in the near future (he didn't give a time table). His assistant who does the electrode test agreed and was very encouraging and very hopeful. And they see a lot of facial palsy cases. She even claims she saw Eden blink twice while we were there. I might not believe her except that the computer showed a huge peak in impulse at the time she claims Eden blinked. So they were all excited and I left the office feeling very encouraged. We'll go back in 2 months.

Wednesday Eden had another hearing test. Her last one was 3 months ago and it was fairly inconclusive. It's a behavioral hearing test in which sounds are played at different decibles and frequencies out of a speaker on Eden's right side and if she turns her head to find the sound a toy in a darkened box lights up. Last time Eden didn't turn for most sounds, but developmentally I think the test was beyond her. This time, looking at Eden, the audiologist said, "this is a different baby from the last time I saw her." So developmentally she was much more capable of performing the test. She did ok turning to the sounds, not stellar. But when the audiologist used a device that transmits vibrations (sounds) through the bones of Eden's head Eden turned to the sound. This suggests some middle ear interference such as fluid in her ears. Middle ear interference was also confirmed by another test, a tympanogram, which measures how the ear drums move when air is puffed into the ear canal. Eden's eardrums did not move the way they should. Another test, oto-acoustic emissions, measures cochlear function and that was absent in Eden's left ear, but present in her right ear. This was the case 3 months ago too. So the next step is the have her ears checked (she gets her 12 month check up next week so we can do that then) and she sees the hearing doctor on the 27th. We'll see what they say about her ears and then talk to the audiologist again about whether/when to repeat the tests. So her hearing remains a bit of a mystery. We know she can hear out of her right ear--we're just not sure of the level of hearing. And why she is showing middle ear interference. She had a cold 2 weeks ago, but is asymptomatic now. Her speech is progressing, though she isn't making the sounds that developmentally she should be for her age. We're going to have a developmentalist assess her once a month and give us suggestions for speech and anything else that isn't already being covered by PT, Occupational therapy (OT) and Vision therapy.

All that may sound overwhelming to you, but we're taking it in stride. I get excited just thinking about how far Eden's come and the new things she starts to do almost weekly. I'm so pleased with her progress. Right now she's sitting in her booster seat, unpropped, feeding herself Cheerios, and "talking" to herself (or maybe me!). Just 2 months ago I wouldn't have expected this.

Theresa

My first baby sling

Posted by tom | Feb 4, 2006

I [Theresa, not Tom] made my first baby sling, a pouch sling to be precise. My inspiration was my friend Serina who I refer to as the Queen of Slings. I was in search of an easy way to hold Eden on my hip b/c she's not the easiest baby to hold and she's getting too big for the Baby Bjorn. I have found my answer! The pouch is cheap to make, easy to make, portable, easy to wear and comfortable. Here's what I did:

1. Tried Serina's Kangaroo Korner Adjustable Fleece Pouch. Really liked it, but I'm still looking for a used one to buy. I just can't bring myself to shell out the $58 for a new one. But then I got to thinking that fleece may not be practical for summer. So I
2. Investigated cotton pouches and almost bought one for $39. Then I
3. Came across directions to make one and thought, why not try? So I
4. Bought 2 yards of 97% cotton/ 3% spandex in a really funky print. I printed out 3 different sets of directions from different web sites b/c they all contained confusing instructions to me. But by piecing together helpful instructions from the 3 sets I came out in the end with a sling that appears to work!
5. While it was fresh in my mind I wrote down my instructions so that I would be able to replicate the process. The 3 sets of directions that I used came from: www.sleepingbaby.net/jan/Baby/tubesling.html
and, oh dear, I see I don't have the websites for the others. But one that is similar is apparently www.ida.net/users/stace/sling.html

Here's how I made it (some of the steps won't make sense without seeing an explanation of the "smile")
1. Cut the 2 yds. of fabric 22 inches wide (this will be enough for 2 slings).
2. Hem the long sides
3. Fold fabric lengthwise
4. Fold fabric widthwise
5. Measure for "smile" and cut. My smile was 27" long at the longest and 24" long at the shortest.
6. Open lengthwise fold
7. Sew "smile"
8. Check fit with baby in sling. Adjust smaller if necessary (you can't go bigger at this point unless you left a big seam allowance when you sewed the smile).
8. French seam the smile.
9. Wear with pride!

There are lots of different ways you can carry a baby in this type of sling. I'm mostly interested in the hip carry. However I did swing Eden around to my back and she felt pretty secure there. So that's the pouch sling. I've included a picture to show you what Eden and I look like using it. But it doesn't show details on what the pouch itself looks like.

Good luck!

Eden's eye surgery

Posted by tom | Jan 30, 2006

Eden's eye surgery went very well this morning. Although her cold was not completely gone she was well enough for the surgery. The doctor loosened the inner eye muscle (the one closest to her nose) but did nothing to the outer muscle. He said the inner muscle was very tight so by releasing it the eye can now travel to her left further than it had been able to do. It's hard to get the full effect of the change quite yet b/c her eye is red and may not even move properly for a few weeks until the muscle heals. But we ran into the doctor as we were leaving and he was really pleased with how her eye was moving. He called it instant results.

She had no problems with the anesthesia. She drank 5 oz. of juice right after she woke up. We were in and out in 3 1/2 hours. An MRI takes longer than that! We need to see the eye doctor next week and she doesn't get her right eye patched again until after we see him (Yeah! A week with no patching!). She was awake for several hours after the surgery but has been napping peacefully for the last hour.

More on the MRI, upcoming eye surgery

Posted by tom | Jan 26, 2006

Not much more to add regarding the MRI. The actual size of the mass decreased and we'll have a follow-up MRI at the end of May. This confirms the vascular malformation diagnosis (shorthand for a bleed in the brain and not a tumor in this case).

Her Strabismus Surgery will be on Monday, January 30. Pray for a routine surgery to go without complications, followed by a quick recovery. Also pray that the surgery will not need to be repeated when she is older.

One Amazing Baby
One Miraculous Year
One Faithful God
Hundreds of Caring Friends

Eden turns 1 on February 22

More Eden Pics

Praise regarding Eden's test!

Posted by tom | Jan 20, 2006

Eden's doctor's secretary called Thursday afternoon to tell us that the mass is smaller! Yeah! Our doctor will call with more details Monday or Tuesday after she consults with the Tumor Board. But she wanted us to have the good news right away. Thank-you for walking with us during this time. We received an answer to our prayer regarding a 'clearer diagnosis.' Pray for Eden's continued developmental improvement, we're particularly waiting for her to crawl (she's so close) and to begin to annunciate sounds en route to words.

OT Eval

Posted by tom | Jan 7, 2006

In case you were wondering the outcome of Eden's occupational therapy (OT) evaluation--

The therapist used a developmental inventory checklist to assess Eden in different areas (e.g. fine motor, gross motor, adaptive skills...). When you tally up the numbers it gives you the age she performs at for the different areas. For example, Eden is 10 months old and she performs at a 4 month old level for Gross motor. Here's where it's important not to get caught up with numbers, b/c the test was not specific enough to accurately measure her skills. It asked no questions about ability to roll over and that's a pretty key skill. According to the test numbers she made no progress in gross motor since June and we know that's not the case. She's made great progress since then. So, for what it's worth, that's the developmental inventory.

We will add OT approx. 3 times per month, alternating with vision therapy (VT). The OT will focus on fine motor skills like self-feeding and picking things up and releasing them. We also plan to do some contraint induced therapy where Eden will not be allowed to use her left arm. This particular therapist also knows some massage techniques that she will use. And b/c she's done some developmental therapy she can give us some tips to help Eden make the appropriate consonant sounds. She doesn't make them yet and should be doing that at this age.

We'll start this Thursday. I'll let you know how it goes when I know more.

Theresa

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