Eden's opthamology appt . . . OT eval

Posted by tom | Jan 5, 2006

Just wanted to give a brief update on Eden's opthamology appt. yesterday. The doctor was once again pleased with how Eden's eye looked. It's very healthy and he thinks it may have come out a little closer to midline since last time. He's ready to do surgery now--he said it wouldn't prevent her eye from continuing to come out, if it's going to do that. And it will only help her, even if another surgery is needed 5 years down the road. Once he straightens her eye, because of her palsy, it still won't move normally like the other one does. But at least it will be at midline and may move beyond that.

The surgery is out-patient, under general anesthesia. When she leaves she doesn't have a dressing or patch over her eye or anything. The incisions are right next to the eyeball itself, so no skin is cut. I forget if the doctor said he does 15 of these a week or per month. Nonetheless, he does many.

Even after surgery we will need to patch the good eye each day, though maybe not quite as frequently as we do now. The purpose will be to maintain visual acuity in the left eye. The doctor believes her vision is very high in that eye, but it's impossible to determine exactly how well she sees out of the left eye until she is able to speak to communicate what she sees. That's a few years down the road.

The secretary will call me with a date for surgery. Side note here--I'm always impressed with the promptness of this doctor. I arrived today 10 min. early and was seen right away. I walked to the appt. and had I walked straight home afterwards (instead of stopping for lunch with Thomas at Panera) I would have been home within an hour. Now how often does that happen at a hospital???!!

Today, Thursday, Eden will have an evaluation for Occupational Therapy. This will focus on her right arm and hand. After the evaluation we can set up regular therapy appointments.

Next MRI is Jan. 19.


Eden Update 11/7/05

Posted by tom | Nov 7, 2005

Thank-you for your continued prayers and encouragements. It is such a joy to receive God's grace and love through our family, the People of God. One particular praise is the continued love and care expressed by Hayley & Ellen. They love their sister, have one-another to play with, continue to embrace their kindergarten community, and do not appear to be suffering from perceived neglect. At times they are tired, but much of that is adjusting to their daily schedule. Note: they sleep right through Eden's midnight calls for mom, even though they're in the same room!

Onto last week . . . Eden visited the facial nerve center (plastic surgeon) for follow-up. Each times she's there they can measure improved movement in the muscles of the left side of her face. So that's encouraging :)

The next day she had another hearing test. This was a behavioral hearing test where she is supposed to turn her head to the direction of a sound. If she turns, a toy lights up to reinforce her correct response. I was skeptical going into it that it would tell us much b/c I didn't think she would respond as they hoped. And she didn't, but they aren't able to say whether that's because she didn't hear the sounds or because developmentally she wasn't able to respond by turning her head. They also tried to gauge by her facial expressions whether or not she heard the sound. But that was very subjective. I know that she can hear. We just don't know if she hears anything out of the left ear. This week we will see the ear doctor and get his opinion. He can check out her middle ear too because other tests they did last week showed that her eardrum was not responding as it should to the stimulus. But that could be due to the residual effects of a cold she was getting over.

In normal baby development news--Eden cut her first tooth (Note from Tom: Hope this means back to more regular sleeping and eating habits)!

Baby Eden Update 10/4

Posted by tom | Oct 4, 2005

We know that many of you have been anxiously waiting for more news regarding Eden's condition. On Sept. 15 she had her follow up MRI where we were told that the mass in her brainstem had gotten bigger. We discussed the possibility of biopsy and revisited the possibility that the mass was a tumor and not vascular. Our doctors conferred with doctors from Boston and the experts were split 50/50--half thought tumor and half thought vascular. But they determined that biopsy was too risky.

Meanwhile, Theresa and Eden traveled to Edmonton, Alberta, Canada to visit friends and enjoyed an immensely relaxing and enjoyable time. It felt good to get away from the crisis and pretend that everything was normal. The day after returning to Pgh Eden had a type of MRI called an MRS. We knew there was a good chance that this test would be inconclusive, which it proved to be. Our doctor also sent Eden's scans to the neuro team at Johns Hopkins for them to review it. They are of the opinion that it is a cavernous angioma. This is the same diagnosis we had been given earlier this spring. Treatment is to watch and wait, with another MRI to be done around the new year. JH doctors wouldn't touch it (surgically) with a 10 foot pole.


Baby Eden Update 9/22

Posted by tom | Sep 28, 2005
Eden's 9/27 MRS did not provide the desired results. She will retake the MRS tomorrow, Thursday, September 29, at 11:45am. Pray for this study to go well and provide helpful diagnostic insights. Note: Eden will be sedated for this procedure.

Eden's MRS: 11:45am

Posted by tom | Sep 26, 2005
Theresa and Eden just returned from a restful and enjoyable visit w/the Bowlings in Edmonton, Alberta. While she was in flight, I received a call that the MRS has been scheduled for Tuesday, September 27 at 11:45am. Pray for this study to go well and provide helpful diagnostic insights. Note: Eden will be sedated for this procedure.

Baby Eden Update 9/22

Posted by tom | Sep 22, 2005

A brief update is that our doctors came back from their conference receiving advise to hold off on the biopsy as the risk, at this time, outweighs the potential diagnostic value. We are in the process of scheduling an MRS (Magnetic Resonance Spectroscopy). We are sharing the most recent MRI w/other leading pediatric neurosurgeons, neuro-oncologists, and radiologists to garner their opinions. Continue to pray for insight regarding a proper diagnosis before moving ahead w/additonal treatment plans.

Do I open my eyes in doubt or faith this morning?

Posted by tom | Sep 18, 2005

The conclusion of the NY Times' Magazine section article Getting Religion caught my attention. After crying ourselves to sleep last night in prayer, the Father has given us the grace to open our eyes with faith this morning. As children of God who rest upon His Word and walk in His Presence with the people of God across time, space, and creation, we accept and embrace living in faith today and waiting for the grace for tomorrow. Our prayer is that we will look around and find you in part of the family of God.

I thought I was out of that business, but maybe not. It took years to acquire the education I missed as a young man, an education not only in books but in a certain comportment toward myself and the world around me. Doubt, like faith, has to be learned. It is a skill. But the curious thing about skepticism is that its adherents, ancient and modern, have so often been proselytizers. In reading them, I've often wanted to ask, "Why do you care?" Their skepticism offers no good answer to that question. And I don't have one for myself. When my daughter and I discuss her budding thoughts about the cosmos and morality, or when my students come to my office inspired or baffled by a book, something quickens within me. The Greeks spoke of eros, the Christians of agape and caritas. I don't know what to call it, I just know it is there. It is a kind of care. It is directed toward others, but also, perhaps, toward that young man lying on his bed, opening the Bible for the very first time.

-- Mark Lilla is a professor in the Committee on Social Thought at the University of Chicago. His book on modern theology and politics, The Stillborn God, will be published by Knopf next year.

Baby Eden Update 9/16

Posted by tom | Sep 16, 2005

Dear Friends and Family,

On Thursday, 9/15, Eden had her follow-up MRI at Children's. Later that evening her doctor called us with the results which show that the affected area in her brainstem is larger than it had been. This was quite a shocker to us and the doctors since her neurological symptoms have been improving over the summer. No one expected to see what the scan revealed.

So what do we do now? We spoke to the neurosurgeon on the phone this morning (9/16) and he gave us the details concerning the possibility of a biopsy. We're now back to where we were in March when we were uncertain as to whether the mass was a tumor or a vascular malformation. The only way to know for certain is to biopsy the mass. Because of its critical location this is a risky procedure and we don't want to proceed without as much information as we can gather. Therefore our next step is to show the scan to other leading neurosurgeons, neuro-oncologists, and radiologists to garner their opinions. Perhaps there is someone out there who has seen a case like this before and has some wisdom to lend. Our doctors will be attending a conference next week with other neurospecialists and they will show them the scans and come back to us with more opinions.

If we go ahead with the biopsy and it reveals that the mass is a tumor, treatment is chemotherapy. If it reveals that the mass is vascular the traditional treatment is surgery, but because of its location I don't think that's a possibility in Eden's case.


Baby Eden Update 9/1

Posted by tom | Sep 1, 2005
Hi All, Thought I'd (Theresa) update everyone once again. Eden visited the plastic surgeon again on Tuesday. This was her second visit there (we were there in May). Let me just interject here to say that I love this doctor. His personal skills are superior! Anyway, he was encouraged by Eden's progress regarding facial muscles. She has 60-65% movement around her mouth (and he agreed with me that her mouth is almost symmetrical). She is developing folds around her nose and chin which indicate that the nerve has reached all the way across the left side of her face. And her eye is moving much better. The only thing that may not recover is her "corneal anesthesia" which is the reflex that causes the eye to blink when irritated (e.g. touched lightly with a small piece of tissue). He has never seen that recover, but didn't rule it out. FYI: the Facial Nerve Center in Pgh is one of only 3 places in the nation that do what they do.

Eden's big week

Posted by tom | Aug 25, 2005

Eden's had a big week this week. On Monday she had her 6 month birthday (!) and celebrated by going to the doctor for her 6 month check-up. She's 24.5 in. long and 11lbs 11oz. Which means she has fallen off the weight chart so we're pumping her full of formula after she nurses.

Wednesday, she had her first serving of rice cereal. She seemed to like it and didn't have any trouble eating it. In fact, I think she did better than Hayley or Ellen when I fed them for the first time. Also today she got her "cervical collar" which is a soft collar, a lot like the kind one would wear if one had a mild case of whiplash. The purpose of the collar is to passively stretch the muscles on the right side of her neck. The collar comes up higher on the right side and lower on the left to allow her to bend her neck to the left. The physical therapy we are doing will actively strengthen the muscles on the left side. Together the goal is to give her complete and balanced control of her head.

The PT comes later today and I'll find out how much Eden should wear the collar. She doesn't like it when I put it on, but soon stops being bothered by it. The good news is that she's easier to hold when she's wearing the collar--not as floppy :-)

Next up for Eden is a visit to the plastic surgeon next Tuesday. I'm eager for him to see the progress she has made this summer regarding facial muscles. Her mouth is nearly symmetrical now and her cheek puckers when she sucks.

Eden Update 8/3/05

Posted by tom | Aug 3, 2005

The coordinator of Eden's care at Children's gave us a call and preferred to postpone Eden's MRI until September b/c of the overall improvement in her condition. She is moving in a very positive direction with weekly physical and vision therapy (at home). Today's visit to the Ear-Nose-Throat (ENT) specialist confirmed that her hearing loss is entirely related to the vascular malformation impinging on her left auditory nerve. He'll see her again when she's 9 months old to take another look and administer a different type of hearing test. He assured us that hearing loss in 1 ear will not affect her speech/language development or her vestibular function.

We rejoice in your prayers as they have moved the hand of God in healing Eden with continued improvement through the means of medical professionals and by His very touch. Please pass this praise along to those in your prayer network who have been holding us up to the Lord in prayer. In Christ, Tom

Eden Update 7/27/05

Posted by tom | Jul 27, 2005

Eden had her hearing test on Monday and although the results were disappointing, they were not surprising. She has no hearing in her left ear, but her right ear is fine. Everything in her left ear functions properly until the sound reaches her auditory nerve. The nerve does not convey the message to the brain. This is consistent with the MRIs which show the mass on her brainstem interfering with the nerves as they converge in the stem. The audiologist thought that her speech and language should not be impeded because she can hear in her right ear. We have questions concerning vestibular function but we'll be meeting with the ENT doc next Wed. and ask him.

On Tuesday we went to the opthamologist. He was pleased to see the progress she has made in being able to move her eye almost to midline and almost close her lid. He said he would do surgery to straighten her left eye at about 1 year old, maybe 9 months if she's not showing any further improvement. Even if the vascular malformation went away he wouldn't expect her eye to move normally b/c the muscle has been shortened for so long now that it wouldn't function normally.

She's had 3 sessions with the physical therapist and is doing well with the neck stretches. She cooperates very well for the therapist. Today she had her first session with the vision therapist. Our goal there is to get her to look at objects and eventually start tracking them. Again she cooperated nicely.

Next up is a visit to the ENT (Ear, Nose, and Throat doctor) concerning her hearing loss. That occurs on Wed., 8/3. And the following day she gets her next MRI to see if anything has changed with the mass on the brainstem. We'll post another update after we have that information.

Thanks for praying. It's neat to meet people that I don't know who have been praying for Eden through their church prayer chains. In the past week I've met several such people. How wonderful!

Keep Cool!


Baby Eden Update

Posted by tom | Jul 19, 2005

I apologize for not updating you regarding Baby Eden's progress.

Eden Linnae is gaining functionality. The home Physical Therapy (PT) appears to be very helpful. We have a vision evaluation tomorrow, a home PT visit on Thursday, a general check-up on Friday (along w/a pre-kindergarten check for Hayley and Ellen), a hearing test on July 25, an opthamology appt and a home PT visit on July 26, a home PT visit on Aug 2, possibly a hearing follow-up on Aug 3 (if July 25's report is negative), and an MRI on Aug 4 (paired w/a visit to the oncologist).

So lots of follow-up, but the most important visit will be the MRI. We're looking for this to confirm a bleed in the brain and a clearer sense of future direction. This will, alongside the other visits, slow down the number of our visits and Lord willing, enable us to focus on PT and observe continuing improvement of function (closing of the eye-lid, decrease on facial palsy, more tracking w/the eye, movement of the head). Thanks for asking, praying, and 'standing w/us.'

Eden's PT Home Evaluation

Posted by tom | Jun 29, 2005

Baby Eden had Physical Therapy (PT) home care evaluation yesterday. A weekly home care PT session will begin when we return from visiting family over the 4th of July. There will also be a vision therapy evaluation in mid July. This will determine if she will also benefit from vision therapy. The goal of the PT is to extend the range of motion of her head. More details later.

Eden@4 months

Posted by tom | Jun 20, 2005

Again, we thank you for your prayers on our behalf. Life is a bit like a roller coaster but generally we're more up than down. Eden turns 4 months old this week and she continues to grow and develop. Her eye has been moving out of its crossed position and her eyelid is closer to blinking. These are very good signs that the nerves are regaining function. The plastic surgeon was able to detect nerve/muscle function in her face and it looks like she may never need surgery. If she does it would be minimal and several years down the road. A hearing test is scheduled for the end of July (the first one was incomplete), but in the meantime we have seen confirmation that she can hear, we're just not sure if she has diminished hearing. She will be evaluated by a physical therapist and a developmental therapist next week so that she can receive in-home therapies. The PT is to address her preference to turn her head to the right. She has recently learned to flip from belly to back and has even gone back to belly a few times. And with a few weeks of supplementing her feedings she is gaining weight nicely. Please rejoice with us at the healing we have observed. And pray for continued progress.

We'd also like to mention that Hayley and Ellen have been real troopers throughout the last 4 months. They know that Eden has some health issues and needs to go to the doctor a lot, but thankfully they don't seem to be traumatized in any way. They've slept over at several different friends' houses when we've had lengthy appointments and they love it. And they love Eden. Ellen calls her my cutie pie and Hayley calls her my Squishy. Eden enjoys watching them and laughing at Ellen's funny faces.

Eden Update 6/7/05

Posted by tom | Jun 8, 2005
Yesterday was more encouraging than Friday's (incomplete) hearing test. Actually we heard several bits of good news! (More)

Eden's hearing test

Posted by tom | Jun 3, 2005
Just to let you know how Eden's hearing test went--"incomplete" is the conclusion from today.

She had to be asleep for the ABR(auditory brainstem response), so she skipped a feeding and I kept her awake all morning (no small feat). When I got there I nursed her and she fell asleep but woke up before the test was over. I was unsuccessful in getting her back to sleep. But there were 2 tests that could be done while she was awake, tympanometry (measures the eardrum response) and otoacoustic emission. We did those and they were both "abnormal" which means she needs to have her middle ears looked at to see if she has fluid or an infection. We'll do that on Tuesday at the family doctor. If he can't see anything she'll need to see an ENT(ear, nose, and throat doctor). We already scheduled that for July 12 (in case we need it). And we'll need to try the ABR again after we get her "ear issues" resolved. It's frustrating b/c we had hoped that this hearing test would rule out a problem and thus not involve more appointments. But instead, this one appt. has multiplied into at least 3 more. As you may have sensed, we're getting tired of appointments again.

We're trying to arrange for 2 friends to come 2 afternoons a week to play with Hayley and Ellen. I guess with the stress of dealing with Eden's health issues I'm turing into crabby mom. So a little breather will be helpful.

Tuesday morning we go for a plastic surgery evaluation and later that day she gets her ears checked.

On the bright side, I won a massage! But that's another appointment...

That's all for now,


Eden's PT Evaluation

Posted by tom | Jun 2, 2005
We took Eden for a Physical Therapy (PT) evaluation yesterday at Children's Hospital. This is concerning her neck and preference to turn her head to the right. She's been like this since birth, possibly b/c the muscle on that side of her neck is shorter. The evaluation went well and Eden cooperated nicely. The PT showed us some things including how to encourage Eden to turn her head to the left. We're to work with her for about 5 min. 5 times a day. Theresa was working with Eden tonight and she was doing so well we kept at it for half an hour!

Eden Update

Posted by tom | May 30, 2005

We rejoice in your continued prayers! God hears and acts as we've seen some tracking w/her eye, some mov't of her eye, and more range of motion of her head. This cooresponds to the MRI finding that the coverage of bleeding in her brain has partially receded. She's also begun grabbing toys in addition to spending long periods of time quietly reaching for and/or chatting w/her reflection in the mirror and her various little friends. Eden and Hayley love to be w/her on the floor or in the bouncer chair during these times. Their care for baby Eden and help w/chores around the house brings us much joy.


Some tracking!

Posted by tom | May 17, 2005
Some tracking occurred w/Eden's eye this afternoon around 3pm. In particular, when she had her 'good eye' covered, we even saw a little white between the edge of the eye lid and the iris! More tomorrow . . . continue to pray for God's healing hand to touch Eden. To Him be all the glory!

MRI results from May 16, 2005

Posted by tom | May 16, 2005

On May 16th we visited Children's Hospital again for several doctor visits and a follow-up MRI. Overall we heard good news. The MRI showed less blood in the brainstem area and no new bleeding. This indicates further evidence that Eden has a vascular malformation in the brainstem, but the doctors will still not rule out the possibility that it is a tumor. As we said before, only a biopsy would tell us for certain what it is and that procedure is too risky to attempt.

The opthamologist indicated that the cornea of Eden's left eye looks healthy which is good because she can't fully close that eye. As long as it remains healthy we need only to continue to use ointment in it to keep it moist. We will continue to wait to see if other areas of Eden's brain will compensate for the affected nerves. This means that the doctor will not do surgery to "straighten" her in-turned left eye until it's clear that it is not getting better on its own. In the meantime we continue to patch her "good" eye to preserve vision in the left eye.

The neuro-oncologist and neuro-surgeon thought Eden looked good. We're concerned that her hearing may also be affected and are looking into having her tested.

We can't thank you enough for your prayers, concerns, gifts, help and so much more. You are Christ's hands and feet to us. We are especially moved by the number of children who pray for Eden. Their prayers are precious and they are learning so much by interceding for us.

MRI on Mon May 16

Posted by tom | May 15, 2005

Please pray for our time at Children's tomorrow as Eden will visit the opthamologist and neuro-oncologist. Then she will have a follow-up MRI as we continue to seek increasing certitude of diagnosis and clarity on next steps in treatment.

A special thank-you to those who are caring for Hayley and Ellen, bringing dinner, delivering groceries, and providing parking. You are not only a great encouragement to us enabling us to step forward at this time, but also a testimony to the truth of the Gospel to the doctors w/whom we interact at Childrens, our neighbors/acquaintances, and those w/whom I share our story w/on campus.

Monday, May 16: Next Appointment

Posted by tom | May 11, 2005

As many of you know baby Eden has a cavernous angioma on her brain stem affecting her left eye, eyelid, and facial nerves. We have received very good care at Childrens Hospital of Pittsburgh and her current situation is stable.

On Monday, May 16, we will have a follow-up MRI in addition to an appointment w/her opthamologist and neuro-oncologist. Please continue to keep her health in your prayers. Thank-you for your many cards and gifts, you are a great encouragement to us!

I will lift up mine eyes unto the hills, from whence cometh my help. My help cometh from the LORD, which made heaven and earth. (Psalm 121:1-2)


Posted by tom | May 11, 2005

Check out 'family' in album under Menu for some family photos.

Theresa_with_Eden.jpg, 22 KB

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