GroshLink

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).

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

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 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.

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

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.

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

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.

Cheers,
Theresa

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)!

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.

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.

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.

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.

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.

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 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.

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!

Theresa

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.'

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.

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.

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,

Theresa