Thursday, December 27, 2007

Fox 17 news link

I think this link will take you to the video of our interview
Fox 17 Pulse

Wednesday, December 26, 2007

Hearing Test result

Ellie had her hearing test this morning. The results came back that she has had some improvement! She has been upgraded to severe hearing loss rather than profound :)

The next step will be fitting her for hearing aids that she will wear only while she is awake. I am not sure when that will happen. Since she has shown some improvement in her hearing, she will continue to be retested frequently.

Thank you for your prayers. We see this as a great answer to them!

Friday, December 21, 2007

Ellie Update

Sorry it's been so long. Things are just sort of seeming normal now, but today I realized there have been a lot of changes we have not told you about.

Ellie seems to have made a leap of improvement this last week. She is awake and aware a LOT more. We think this is due to the craniosacral therapy, because it started last week after her appointment. Last Friday when she got home from her appointment, she was awake for 5 hours in the evening! Now, since that appointment, she has been more aware of simple things like a diaper change or being switched from one person's arms to another's. She has started to stir in her sleep, an arm raising toward her face, or a leg moving up and down in her sleep. She has had longer awake periods, and often more awake periods in a day too. She still has her times of sleeping for 8 hours straight during the day, but that is more rare than before.

This morning she woke up around 8 when I got up, and by 10:30 she was still awake so I thought I would try to rock her to sleep. So I tried. By 11, it was time to pump and she was still awake, so I had to put her in her crib. She is still awake! Noah is over there touching her :)

Her muscles just seem more in control, and she is having more spontaneous movement. We are really excited that when we pick her up there is some form to her, rather than being a floppy rag doll. She just feels so normal.

She saw her OT this week to get new foot splints. Her feet had grown out of the hospital ones.

She will repeat her hearing test the day after Christmas. Please pray for a miracle.

She has physical therapy once a week and craniosacral therapy once a week. All of her appointments and care are taking up a lot of our time, but we are really enjoying our time with her. Our family is so blessed to have her home with us.

Thank you all for your continued support and prayers. Thank you so much for the gifts that are helping us pay for her therapy. I hope you are encouraged that it is truly helping her progress.

love and peace-

Thursday, December 20, 2007

Fox 17 News

Fox 17 news will air the piece about Ellie on Monday night at 10 pm.

Monday, December 17, 2007

WZZM 13 News--Tonight--edited

The video clip is up at this link:
WZZM Health Section

The news piece will air at 6 pm tonight (but you might want to watch at 5:30 too just in case) and will re-air on Sunday morning at 11 on their Health News show. It will also be on their website eventually--we'll post a link when it is up.

Saturday, December 15, 2007

TV interviews

Hi Everyone

When Ellie was at DeVos, she was one of the first babies to utilize the new neonatal MRI machine. DeVos Children's is one of the first in the country to have this technology. We have been asked to share the experience of "one Grand Rapids family facing a medical challenge and the new technology that helped determine her treatment." We will be interviewed by a couple of news stations and possibly the Press.

Our first interview is Monday with News channel 13. I am not sure if it will air that night, probably if they have room for the segment.

Another interview is with Fox 17. It is set tentatively for Tuesday. Again, not sure when it will air.

If we find out more info about the interviews, we will keep you updated.

Please pray that the interviews go well, that we can share the beauty of Ellie's story, and that I look good on camera! ha ha.

Can you ever get your house clean enough for a TV crew?


Wednesday, December 12, 2007

Pictures are Here!

Last week we had the opportunity for my friend Devon to take pictures of the family. It was so nice to have her come to the house, rather than having to go somewhere to get some quality photos taken. So, here they are! There are a few more in the gallery, under Family1207.

Ellie's first professional photo, and first time wearing a dress ;)

Noah's 5 year photo--so grown up!

Seth's (almost) 3 year photo

The kids together. We could not keep their hands off of Ellie!

The Family, all together finally :)

Our girly-girl

Mom and Ellie

Typical Seth :)

*images copyright. please don't steal.

Tuesday, December 11, 2007

Craniosacral Therapy

I've been waiting for Adam to post about this because I could not think of a concise way to explain what it is. Then I found this description online--it sounds almost exactly like how our therapist described it! So, here is a great summary for you!

What is cranial osteopathy?
Cranial Osteopathy is a specialist area of osteopathy that concentrates on the fine movements of the bones of the head, the cranial bones. The brain is immersed in a fluid called cerebro-spinal fluid that bathes and protects the tissues in and around the brain. This fluid pulsates at around 6-15 times a minute, in a healthy craniosacral system, and is known as the cranial sacral rhythm. By manipulating the bones of the head and face the cranial osteopaths can encourage and improve the circulation of cerebro-spinal fluid, helping the body restore itself to health.

Cranial osteopathy was developed by the American osteopath William G Sutherland in the 1930s. Contrary to popular belief, Sutherland found the cranial bones were not actually fused but were capable of minute movements. By experimenting on his own head using gentle compression he showed that he could detect and help many problems. He developed refined and subtle techniques using gentle pressure to encourage the release of tension and strains in the cranium and throughout the body.

Although the name suggests manipulation of the head, cranial osteopathy is a treatment of the whole body. Treatment may also involve the use of other osteopathic techniques.

What is Craniosacral Therapy (CST)?
The craniosacral approach evolved from cranial osteopathy and extends the focus to the whole cranio-sacral system, which consists of the bones of the cranium, spine and sacrum, the surrounding membranes and cerebrospinal fluid.

Craniosacral therapy was pioneered and developed by American osteopath, John.E.UpLedger and fellow researchers at Michigan University following extensive scientific studies from 1975 to 1983 at Michigan State University.

Practitioners are trained to use their hands to sense the flow of cranio-sacral fluid (CSF) feeling for restrictions and congestion that can affect the cranial sacral rhythm. The effects of which may be physical and emotional. By applying gentle pressure to the sacrum and the skull, the practitioner aims to release restrictions in the craniosacral system to improve the functioning of the central nervous system, encouraging the body's natural self- healing processes.

Ellie's appointment went really well and we felt like she was a bit more aware during and after the appointment, but we didn't notice drastic improvement (and we didn't expect that either). It is supposed to take 4-5 visits before most of the work can be done, and in Ellie's case, maybe longer. We'll keep you updated!

Monday, December 10, 2007


I found this poem somewhere on the internet. As much as I miss the NICU in a kind of strange way, I am so thankful that we will be home for Christmas (God-willing).

Twas the night before Christmas, and in each isolette
Little creatures were squirming and getting all set;
Machinery sat by their bedsides with care,
In hopes that good breathing skills soon would be there.

Day shifters were home all snug in their beds,
As visions of overtime danced in their heads;
While preemies on ventilators, and some on CPAP,
Had just settled down for a long winter's nap...

When out in the hall there arose such a clatter,
The residents woke up to see what was the matter.
Away from the sink I flew like a jet
To make sure all was well at my baby's isolette.

Some bilirubin lights with their powerful glow
Gave the lustre of mid-day to babies below,
When, there before my wondering eyes, it would seem,
Was an oversized stroller and a medical team.
With a handful of needles with which they could stick you,
I knew in a moment it must be St. Nicu.

More rapid than eagles his specialists came,
And he whistled, and shouted, and called them by name:
"Now, Nurses! Now, Residents! Now, Neonatologists!
On, Social Workers! On, Respiratory and Occupational Therapists!
From the front of the unit! To the end of the hall!
Now dash away! Dash away! Dash away all!"

Up to each baby's cribside they flew,
With the stroller full of toys, and St. Nicu too.
And then, in a twinkling, they stopped at each bed
And tucked in the babies and got them all fed.

As I looked at my baby, and was turning around,
Down our aisle St. Nicu came with a bound.
He was dressed in red scrubs, and I could instantly tell
That his clothes had an obvious hospital smell;
A bag of stuffed animals was flung on his back,
And he looked like a peddler just opening his pack.
A little red pen he held tight in his teeth,
And a stethoscope encircled his neck like a wreath.

He was chubby and plump, with a few extra pounds,
And I laughed when I saw him there doing his rounds.
A turn of his clipboard and a twist of his head
Soon gave me to know I had nothing to dread;
He spoke few words, but came straight to my side,
And running down his face was a tear he had cried.

And laying his hand on the back of my head,
He gave me a nod, and slowly he said:
"Each night you come here you're aware of the danger,
But your baby is loved by the One in the manger."

Then the medical team gave a thumbs-up and smiled
And St. Nicu placed an animal next to my child.
But I heard him exclaim, as they rolled out of sight,
"Merry Christmas, tiny baby, and have a wonderful night!"

Wednesday, December 5, 2007

Wednesday Update

Hi Everyone

The appointment at the Neurologist went well today. I will try to summarize what happened.

  • Test results: Most of the results for the metabolic tests have come back, and they are all normal. They were testing her amino acids, fatty acids, organic acids, to make sure that they were being used properly, and so far everything looks great. She also got some results back from the muscle biopsy. Basically, they were not able to make a diagnosis based on what they found. What was interesting was that they did not find evidence of "myopathy," which basically means that they think it is a disease of the nervous system, rather than a muscular disease (e.g. muscular dystrophy). This pretty much confirms what we had thought, that it was more a poor turn in her development in the womb, rather than a anticipatory disease. The good news from this is that it is likely not degenerative, where the muscles just get weaker and weaker. But, the doctor did restate that with babies, there is often not enough muscle in the sample to say anything definitively, so there is as chance that the procedure would be redone sometime in the far away future.

  • Eyes: We have been interested in the fact that Ellie is really sensitive to light, especially flashes and sudden bright lights. We asked the doctor about this and she said that the pupils are a muscle, so with Ellie they are really weak and are not doing the dilating type activity that they are supposed to do to react to light, so that is probably what is making her uncomfortable. So we are off to search for some cute hats! What do you think of these?

  • Sleep: It was interesting talking to the doctor about how much Ellie sleeps. She said it is normal for kids like her to sleep a lot and not have very much energy to stay awake. She told us there are kids who are 6 or 7 who are only awake for two 2-hour periods each day! But, we have seen improvement in Ellie: she was awake for 3-4 hours this evening!

    It was nice to hear encouraging things from the doctor. She was impressed with Ellie's new movements in her mouth, and how much she moves her legs. She said she remembers telling us that Ellie was one of the more severe cases she had seen. She said that is no longer true now that she sees Ellie's drive to breathe on her own without any support. She can tell that Ellie has a strong will to live!

    Okay, off to bed. We have another busy day tomorrow with two different therapy appointments: the cranial sacral therapy is in the morning, and the physical therapy is in the afternoon.

    God Bless,