GroshLink

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

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.

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.

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.

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)

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