Fox 17 news link

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

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!

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-
Emily

Fox 17 News

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

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.

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?

peace,
emily

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.

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!

St NICU

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 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? http://www.scarletstitch.com/girls/accessories.html

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,
Emily

Friday Update

I'm sitting here trying to update, but I don't know what to say. On one hand so much has happened, on the other hand, it is starting to feel like boring old life to me.

Eleanor is still doing as well as she can be medically. She has been to the surgeon and to the ear, nose, throat (ENT) doc. They both say she is doing fine.

Hearing: The ENT checked her ears again and said there is nothing anatomical that is affecting her hearing (no fluid, malformation, etc). He said she will be retested for hearing around the first of the year. If she fails again, the next step would be hearing aids. If she doesn't show significant improvement with the hearing aids, then we would start talking about cochlear implants. That's all down the road though.

Neurologist: this week we have an appointment with the neurologist. It is one appointment I have been "looking forward to" because we will hopefully get some test results back for the metabolic testing. I guess there is also a chance they will have info on the skin and muscle biopsies. I am eager for the neurologist to see Ellie, and the little improvements, to see if they say anything about her future.

One of the big improvements we have seen in Ellie is her facial muscles. For the first month of her life, her face seemed completely paralyzed, and she did not open her eyes or move her mouth. Now she will often startle and open her eyes out of a dead sleep (though she still sleeps way too much). She is also opening and closing her mouth/jaw very often, and has recently shown signs of sucking. I "nurse" her quite often, and she will take a few sucks before tiring. (She is not sucking hard enough to get any milk though).

Cranial Sacral Therapy: This coming week we will have an appointment to see a Cranial Sacral Therapist. We are going to start pursuing this and potentially other alternative methods since at this point conventional medicine has nothing more really to offer Ellie. We will be using some of your generous gifts to try these methods for Ellie. Thank you for your help!

Night Nurses: a lot of you ask how this is going. It actually is going quite well. We have two steady nurses that are really kind and quite meticulous. I am comfortable leaving Ellie with them. It is disturbing how easy it is to say goodnight and escape upstairs sometimes-- and then I feel guilty for that too!

The boys: The boys are adjusting quite well, similarly to how they would if any new baby joined our family. Noah wants to touch her all the time, and Seth wants us to put her down and pick him up! I do think Noah worries about her though but doesn't always know how to express it. He talks a lot about "can we keep her with us forever?" and told me he had a dream that Ellie had to go away, and we got a different baby. I think her time in the hospital really affected him.

Things are actually going really well with school for Noah. He has finished the preschool handwriting book in good time, and we will be moving on to the kindergarten one. He is also loving his math and will exclaim "I learned something!"

Adam: We are so blessed that Adam has such a generous and flexible employer. He has been able to come with the doctor appointments and is quite involved with Ellie's care. He loves to do her physical therapy and is often seen on the couch or floor exercising her arms and legs.

Me: This week was much better as I had some visitors, some doctor appointments, and some opportunities to get out of the house. It will be a long winter, but we hope it will be worth it when we all make it through healthy.

Okay, so I guess I had a few things to say! Thank you all for your support and prayers!
Love,
Emily

Pictures from Thanksgiving Weekend

Osterink Thanksgiving Dinner:





Adam's Family visiting from Chicago area:







Decorating the Christmas Tree:

Happy Thanksgiving

We are so thankful this year for our little Ellie and for all of you! Thank you for your support and prayers.

Ellie continues to make little improvements that make us thankful each day. Lately she has been moving her tongue, puckering her lips, and moving her jaw up and down! It is amazing to watch, and we continue to work towards her being able to suck.

This is our Thanksgiving testimony that Adam shared at church:

“Give thanks in all circumstances, for this is God’s will for you in Christ Jesus.”
(1 Thess 5:18)

During these past few months and as the Thanksgiving holiday approaches we can’t help but be reminded of this piece of God’s word. It has special significance for us because of the tragic start of Eleanor’s life. Consider how effortless it is to give thanks when life is good. We give thanks when we receive a promotion at work or receive a good grade on the test we took in our toughest class. But what about when circumstances do not go as planned, when providence covers the brightness and warmth of the sun. How does one give thanks for an unhealthy child? How is it humanly possible to give thanks when everything looks so grim? It is at that point we are challenged the most to give thanks and not curse. What we have learned is that we cannot give thanks on our own for such difficult things. That which God has asked of us he also provides in abundance. Like a skilled artisan he weaves thanksgiving in our hearts, patching and repairing what is worn and damaged. It is through Christ that we are able to give thanks in all circumstances. We can give thanks because he works faith, hope, and love in us, and we receive his peace.

As a family we have so much to be thankful for. The very fact that our daughter is home with us breathing on her own is enough. But our prayer has been during these past two months with Eleanor that God would be glorified in this circumstance. We are so thankful to witness that glory appearing around us each day. Many have shared with us that through Eleanor’s story their faith has been strengthened, lives have been changed, and hope has been renewed. What a joy it is for us to hear of the positive fruit God is working in others through this. Truly God can work through the weakest and frailest of us all and accomplish his good purpose.

Family, friends, and our church family have been so dear to us this year. Family and friends have been so selfless in their willingness to help. Even complete strangers have blessed us, leaving us staring at one another in shock. What a blessing Harvest Church has been to us since becoming members one year ago. We can now see God’s providential hand in bringing our family here to this church. The meals, the support, the prayers, and the time spent, have been such a blessing. At Harvest there is a genuine compassion for those in need and willingness to love broken people, which brings glory to God. We have been touched and have learned so much by experiencing this first hand. The kindness and support of all believers around us is something for which we are truly thankful to God.

Giving thanks in all circumstances is possible amidst frowning providences. We have found that the question of ”why is this happening?” needs to be tucked away for later, and we need to move forward in faith. The more appropriate question for our family now is, “God, how might you be glorified in this circumstance?” We are just beginning to learn and see that he will show us more than we can ever imagine. May God be glorified even in the darkest of times!

Monday Update

Things have been settling down around here. We made our first official outing besides the dr's office, this time to church yesterday morning. It was so great to be there with Ellie after all these weeks of praying for her. It was nice to see our church family and share her with them. It was also nice that my parents took the boys to church with them so that we could focus on Ellie and the service :)

Babywearing is really beneficial for Ellie. She is stimulated by all the things going on around her. She can feel our hearts beating and our voices vibrating. It is especially crucial for her since she cannot hear or move around a lot. We are providing the stimulation she needs outside of her crib. Of course, we love it too, after all those weeks of being seperated!

Things have been going well with the home nursing. Thank you for your prayers. We have two nurses that will be sharing Ellie's case. They seem quite meticulous and conscientious. And they don't smoke! ;)

Ellie has handled her cold really well. It is nice to see how strong she is. It is pretty much cleared up already, and she is coughing up the secretions really well.

Thank you for continuing to think of us. We hope that some of you will be able see Ellie in the flesh sometime soon. I personally am hoping that we will be able to get out of the house more as she gets older and stronger.

We do have some rules for visiting with Ellie:
1. Please help her protect her fragile airway.
-no smoking or smelling like smoke
-no strong perfumes or lotions
-don't touch her tracheostomy area
2. Please help her stay healthy
-wash your hands before touching her
-please don't touch her if you have not sanitized your hands
-please do not visit if you are not feeling well or have been exposed to illness

Thank you all for your help!

Margaret's Hope Chest

While Ellie was still in the hospital, we were contacted by a wonderful organization called Margaret's Hope Chest. It is an organization that has been able to bring "beauty from ashes" by spreading hope and comfort that came out of their own tragedy. That is what we hope Ellie's life will do too: spread God's grace through the story and journey of Ellie's health.

What is even more incredible is that, unbeknownst to either of us, the mother of the director of the organization lives less than a block away from us! She was able to walk the quilt over to us.

I encourage you to look at their website. They are an incredible example of hope and spreading God's comfort despite their own tragedy. You might even be able to help them out!

Thank you Margaret's Hope Chest for giving us a gift of comfort and hope during this difficult time.

And now, the pictures :)

Thursday Update

Well, Ellie has her first cold. I guess it isn't surprising because the boys have runny noses too. She has needed suctioning every 15 minutes around the clock it feels like. But, on the bright side, she seems to be handling it pretty well and is already on the up swing.

We are trying to settle into a routine around here, but it is pretty overwhelming at times. The boys are starting to feel the stress and are having outburts and times of anger. I am too :(

Here is Adam doing Ellie's physical therapy with her last night. She was nice and awake after we gave her a bath.





Here is Grandpa Osterink holding Ellie on Sunday.


Well, my dad has generously taken the boys for a while this morning, so I am going to sit down, hold Ellie, and relax.

Monday Update

Playing games with the boys. Noah took the picture, hence my head being cut off :)

Well, it is my first day on my own, and so far it is going quite well. We even were able to get some homeschooling done! Hopefully that will counterbalance the fact that the boys are upstairs playing gamecube right now, LOL.

We have our first of many various doctor's appointments today, this one being at the pediatrician. So, we will pack up the portable suction machine, monitor, go-bag, etc and head a whole quarter mile down the street to Alger Peds.

An update on the nursing situation: Thank God we have had pretty good nurses the last three nights. We have been able to sleep, and they have taken good care of Ellie. I still hate the idea of a stranger taking care of my daughter in my own house, but I'm sure they won't be strangers for long. We have also heard that there is a possibility that we could contract our own nurses, people we knew through friends and family. Now that would be ideal! So nurses, get your resumes ready :)

Please continue to pray for us. We are only surviving by your prayers and God's grace.

Love,
Emily

A day in the life of Ellie

Abridged edition:

0800 Mom just came downstairs. She's saying goodbye to the nurse and finally getting me out of the crib! Time to eat. We can finally take my annoying splints off of my hands and feet. Oh, all this moving around has shaken up some secretions.. time to suction me!

0830 Mom is removing the dressing from my trach and cleaning around my stoma. I don't like it when she rubs the q-tip around when she is cleaning. I think I will cough and interrupt her so that she has to suction me again. Maybe I will poop too to put off the torture of the trach care.

0900 I'm resting on daddy's lap and he is exercising my arms and legs. When he works on my ankles I start to get upset.

0930 I'm relaxing in my comfy chair and my brothers are throwing cars at each other. It's quite entertaining until Seth starts crying and mommy has to go make him feel better. I think I will cough again so that daddy will come suction me and sit next to me.

1030 I'm starting to get hungry. I can see mommy sitting in her chair pumping some fresh milk for me. Even though I can't taste it, I know mommy's milk is what is making me get stronger and feel better.

1100 Finally daddy is pouring the milk into my feeding tube. I'm starting to feel sleepy....Oh yeah I am hoping mom and dad will forget about my ankle splints; these need to be put on until 1700.

1300 My breathing is feeling a little raspy and I'm starting to cough. Daddy quickly suctions my trach and also does my mouth while he is at it. Much better!

1400 Time to eat again!

1500 Mom throws me in the sling and starts to clean all the supplies that have been used in the last 24 hours. It is nice to have a change of scenery, even though it is the kitchen sink. I may have all these wires pulling on me, but it sure is nice being close to mom.

1600 Noah is kissing me and touching my face. Dad is yelling at him, asking him if he cleaned his hands. Noah keeps repeating, "Good morning Ellie.... Good morning Ellie," as he peels my eyes open. Doesn't he know I need my sleep? I am a growing baby!

1700 Mom just got done pumping again and I have been awake a little while trying to tell her I am hungry. Since I can't talk, I cough, turn my face red, and hyper-extend my neck....It's the best I can for now. Oh, and more suction of course! My ankle splints are off now too.

1800 Mom and dad are cleaning my suction equipment while I contemplate the beauty of the wood grain of my crib. Dad is cleaning out the fluid canister for my suction machine, while mom is making fresh acetate solution for my suction catheters to be stored in. While mom and dad are in the kitchen, Noah sticks his hand in my crib to touch my face again.

1900 I am on dad's lap again doing physical exercise. Dad is also massaging my face and tongue; some day I hope that I will eat food through my mouth.

1930 I need my trach and G-tube site cleaned, and fresh trach ties and dressings put on around my incisions (aka stoma). I don't like getting poked with q-tips, I make sure to let me know by turning my face fire engine red.

2000 I am hungry again and mom is feeding me through my G-tube. Whoops Mom spilled the milk out of the syringe again. No worry, at this point, Mom has stored up so much milk in our freezer and deepfreeze that we have contracted for off-site storage (aka Grandma and Grandpa's house). Oh no!Daddy has my ankle and wrist splints in his hands! I try to punch and kick him, but he always manages to get them on. I guess they are good for me, especially if it keeps me from having surgeries later on down the road.

2100 Dad turns on my humidification collar and places it over my trach. I will wear this all night so that the secretions in my trachea do not get too thick and plug my trach. It is actually really annoying, the mist is so profuse that my clothes, neck, and trach dressing get all wet. But it sure beats an emergency trach change.

2200 The nurse, who will watch me while I sleep, arrives at our house. Dad explains everything about my care, supplies, and equipment. The nurse does an initial assessment of my vitals.

2300 I am fed again, suctioned, and dad and mom go up to bed.


My humble abode


A portion of my supplies


My feeding "button" (and comfy cloth diaper)


My trach (and cute cheeks)

Friday Update

cleaning trach supplies with mommy


relaxing with daddy

Home sweet home. We are enjoying the process of adjusting back to home life. Ellie has been great, except the fact that she has slept all day and then is awake until 2 am! We are uncertain about how to wake her up during the day since she can't hear and does not respond a lot to stimuli...

Things did not get off to a good start with the in home nursing. We have very high standards for the people that will be caring for Eleanor, and they were not met the first two nights. We are working with the nursing agency to find people that will meet our standards, and until they are met we will be caring for Ellie at night by ourselves. This process has been very difficult for me and Adam to say the least, so please pray that somehow we will find a person that will fit in our family. (Marsha, Rose and June: are you looking for a new job?) ;)

We are so happy to be at home. Please keep praying for us that we would find a nurse that we like and that the boys would get used to their sister being at home.

Welcome Home Eleanor

Eight weeks ago today, on Wednesday, September 12, our dear and precious Eleanor Rose was brought into this world. We did not have any idea of the journey we were about to embark on-- how difficult, how devastating, and also how merciful and beautiful the journey would be. Eight weeks later, we can clearly say that our God is all-powerful, all-knowing, and has been oh so kind to us.

I don’t think I could put it any better than our dear friend Ruth put it this morning:

“Only God knew eight weeks ago today when you woke up, what kind of journey you would walk these past weeks. Through tears and fears, through the peace and trust, through the disappointments and the joys, God has been with you. You have done amazingly well, you have told the story so that God would be glorified. Many have prayed for you and your precious little girl and in doing so have been brought closer to the Lord. Hearts have been touched by a little baby named Eleanor Rose Vedra. We continue to pray for you and for a smooth transition in taking Ellie home. We praise God for the progress so far and we plead for His grace, mercy, peace, and healing touch in your lives.”

I hope you all know how you have been our strong partners through this journey. God has heard the prayers of the saints; we could not have made it without your support. We pray that our lives and Ellie’s life will bring glory to our God. He is so good to us.

We hope this video conveys God's faithfulness to our family:

Tuesday Update

Well, things are all ready here in the house. Our family room has turned into a hospital room! All of the equipment and medical supplies are here and set up. Things have been going really smoothly to get everything ready.

We plan to arrive at the hospital around 2 pm tomorrow to pick up Ellie. Yesterday she tested out her carseat, and it looks like she will be fine riding in it. Our first home nurse will be working tomorrow night! It will definitely be a transition, but we trust that our home nurses will be as kind and wonderful as our hospital nurses have been.

Don't worry, we will try to update when we get home tomorrow!

Love,
Emily

Monday Update

Grandma Vedra holds Ellie for the first time

"Rooming In" went great last night! It was exciting to all be in one room together for 12 hours, and we feel even more confident that we will be able to perform Ellie's care by ourselves. We basically set an alarm for every three hous, awoke, and suctioned her and fed her. We tried out our home equipment, and that seemed to work quite well.

We have been really busy today trying to tie up loose ends. We have been talking to doctors and therapists to make sure we know everything we will need to know for our transition home. Tomorrow we will have people stopping by the house for us to sign paperwork, learn equipment, and get the home care started.

And then Wednesday will be here!

Saturday Update

Things have been moving along quite well. We have been told that Wednesday will most likely be the day that Ellie is discharged! All of a sudden it seems so close. We are planning on "rooming in" on Sunday night. We will get our own room to share with Ellie and get used to doing all of her care. It will be exciting to get a taste of what it will be like to care for her at home.

We have been notified that we are approved for 10 hours of nursing a day. We have chosen to use those hours at night, probably from 10pm to 8am. We can always rearrange things as we get used to it.

This next week will be a very exciting and eventful week. Before we leave the hospital, we will meet with home equipment people, receive our countless boxes of supplies, meet with the private nursing company, and tie up any loose ends at the hospital.

There are a new round of tests coming up. The neurologist has ordered samples to be sent to Mayo to test enzymes for metabolic disorders. There are a lot of different metabolic disorders, and many of them are pretty scary. I don't think we will know anything about them for a while, but pray that it will not be bad news. We have not talked to the neurologist about the likelihood of Ellie having a metabolic disorder or why she ordered the tests, so that is on our list of things to do before we are discharged.

So, praise God that we will all be under one roof very soon! It is exciting and scary at the same time. We are not sure what it will be like to care for Ellie by ourselves; we are not sure what it will be like to have nurses in our home while we are sleeping; we are not sure if we will ever dare venture out into the germ-filled world :-). So many unknowns, but one thing we do know: God is watching over us, and He cares so much for Ellie. We know everything is in His plan.

peace-
Emily

Sad Today

Our little pumpkin

Just feeling a little down right now. Ellie just failed her third hearing test and has been deemed to have "profound hearing loss." We're not sure exactly what that entails right now, but it doesn't sound good. It is hard to think about all the times I have sung to her or played her music, and she was not even able to hear it (?) It just doesn't seem fair that she already is trapped in a body without the ability to move very well, but she also cannot hear or speak. Sorry, this has just kind of cast a cloud over my excitement to have her come home.

In other news, we were taught how to use our portable home equipment today. It seems pretty cool. We will have a monitor that is similar to the ones at the hospital in that it monitors her heartrate, breaths per minute, and oxygen saturation. We also learned to use the portable suction machine. Early next week we will have the home equipment delivered along with the supplies we will need. She really is coming home!

Ellie's first tub bath

Last night, we gave Ellie her first bath in a tub. We were prepared for her to hate it, but to the contrary, she loved it! She was really relaxed in the bath and was nice and clean afterward. Her g-tube button can go under the water, her trach obviously can not.

My beautiful sister Julie holding Ellie

Monday Update: More good news

Ellie's new blanket. Thanks Brenna and Braelynn!




We continue to be amazed at the works of God. We had our "care conference" at the hospital today. Things are really moving forward with Ellie.

Breathing: The doctors are quite impressed with Ellie's ability to breathe without any support. It will help her remain strong if she ends up getting sick. She breathes through the "artificial nose" during the day, and uses the humidification collar at night.

Feeding: Ellie is now being fed by gavauge every three hours. She is at full feeds of about 2.5 ounces. This is what her feedings look like now:

Diagnosis: We received the test results for myotonic dystrophy today: they are negative! This is especially significant because it rules out the main diseases that are degenerative, where she would get worse. Now we can have hope that Ellie will remain in the state she is in, or even get better.

The skin biopsy and muscle biopsy were sent to Mayo for testing. It will probably take a while before they are able to tell us anything.

Home: The have a target date for Ellie's discharge of Nov 7 or 8. That's the end of next week! We can't wait. The next week will be quite busy as we get the house ready, get trained on our home equipment, and various other things that need to happen before she is home.

Prayers:

That Ellie continues to improve in her muscle strength.

That things would go smoothly in preparation for Ellie's homecoming.

That we would all be able to settle into home life without too much trouble.

Thank you all for your prayers. Please join us in praising God for all of his care and blessings.

Thursday Update

Ellie is now trying out an HME (artificial nose) on her trach. She is doing awesome! They have her using it for 6 hours during the day.

The HME fits onto the end of the trach tube and collects exhaled moisture to humidify the next breath. She will still use the bulky humidity collar at night. More information on humidity and trachs can be found here.

Here is Ellie with the HME on:


So much easier to hold and cuddle her:

Feedings: The doctors have been steadily decreasing the amount of time they have her feeds spaced over. She is now getting her entire feeding over the course of 30 minutes. Next step: bowlous feedings! She is doing a fabulous job of digesting the milk, and has little to no residual (leftovers) after she is done digesting the feeding.

Home: God is continuing to answer prayers! They have found a nursing company that is willing to work for Ellie, and the discharge nurse is now saying we should be home in two weeks! We hardly dare say it out loud, but it continues to look like we will be home sooner than we thought.

Ellie has been in the hospital for 6 weeks. It has been an amazing journey. We have truly experienced the valley, the depths of sadness and desperation, but, by the grace of God, we have come out on the other side and can proclaim: "How great is our God!" We could not make it without the support of your prayers and encouragement, from both friends and those we do not know, though you are all friends in Christ. We know this is really just the beginning of a lifelong journey, but now we can rest assured that anything is possible with God, and we are not afraid.

Our love and peace to all--

Emily