Things are Looking Up

I think we have turned the corner here. Ellie is finally awake and her breathing is doing great now. She is pretty much off the O2 and getting back to normal.

The rest of the family is starting to shape up. Seth and I were hit the hardest. Seth's stomach flu lasted off and on about a week and he had fevers too. I think I ended up with the flu and was in bed for the better part of five days. I have not been this sick in 10 years!

Adam did a great job taking care of all of us, including doing the majority of Ellie's care both day and night!
[caption id="attachment_247" align="alignnone" width="400" caption="Ellie sick on Christmas Eve"][/caption]
[caption id="attachment_248" align="alignnone" width="400" caption="Ellie is feeling better and awake!"][/caption]
[caption id="attachment_249" align="alignnone" width="400" caption="Ellie and the guy who nursed her back to health"][/caption]

Check out Adam's new glasses :)

Prayers Needed

Well, we have had a pretty rough Christmas so far. We have all been sick in one way, or more than one. Some of the complaints have been: stomach flu, fever/chills, headache, eye pain, ear ache, etc.

Ellie is bearing the brunt of it. She has had pretty much all the symptoms above, including respiratory distress too. She has had moments where we really thought she was coming out of it, only to get worse.

We took her into the doctor (again!) today and are really trying some last attempts at pulling her out of this before we need to be admitted. We gave her a dose of steroids and an antibiotic shot today. Please pray that these drugs are effective and things begin to improve. Otherwise we will have no choice but to head into the hospital.

Thanks.

Ellie's Friend

Ellie has a new friend. Her first dolly. I think it is the perfect companion for her. The baby is soft and cuddly. It is also weighted. The weight will offer comfort and stimulation. The weight can also offer support.

Ellie was blessed with this special friend from a very kind and generous woman who heard her story. God continues to bless us with the kindness of others. Ellie's story continues to be told.

Pictures

Check out pictures from Thanksgiving on my sister's blog

Pictures

More photos here:

My Helpers

"What great helpers you have!" is a common comment I get when I am out alone with the kids. And it's true: I could not get much accomplished without the help of the boys, especially Noah.

Today I went out to Costco with the kids to do a major grocery trip. I pull up into the handicapped spot and Noah helps Seth out of his carseat. Then Noah pushes Ellie in her wheelchair, while I push the cart and keep an eye on Seth. We always have to look at the toys first. And then the movies. Finally, we get down to business and quickly fill up the cart, Noah pushing Ellie along, with frequent stops to kiss her. We have to stop for lots of free samples, but Noah has gotten good at eating while pushing Ellie's chair. As we reach the checkouts, I am panicked to hear that Seth has to go to the bathroom. Thank goodness for Noah! He brings Seth to the bathroom while Ellie and I check out the groceries. Now it's time to get our treat: lunch at the food court. I push the cart full of groceries to a table, where the boys sit down and keep an eye on things. Ellie and I go stand in line and order our lunch. After all the food is accumulated, I catch Noah's eye and wave him up to the counter to help me carry the food while I push Ellie back to the table. Now it is time to feed Ellie her lunch. Noah runs to get me some napkins while I push in Ellie's food. After lunch, we head back to the van, where I load up Ellie and Noah helps me load the groceries. Another successful shopping trip! I could not have done it alone!

Ellie's Diet

Here is the post I promised about Ellie's diet. Many of you have seen the green bottles of food we are feeding Ellie and have inquired about what she is eating.

When we were leaving the hospital, we asked them what we would feed Ellie after she was weaned off of breastmilk. (I couldn't envision pumping forever for Ellie!) They told us she would get a formula like pediasure for the rest of her life. I wasn't satisfied with that answer, so I started researching different options. I found a group of people online who were giving their children a blenderized diet of whole foods, and I knew that was what I wanted to do too. Why couldn't Ellie eat a diet of whole foods like the rest of us?

Ellie was slowly introduced to solids at around a year with yogurt and bananas. After I got a dietician on board with my plan, we introduced more foods over the last 2-3 months to where she is now-at her goal diet. As far as I can tell, Ellie is one of the first children in Grand Rapids to eat a blenderized diet through her tube--we love being the guinea pig :) Ellie is doing great on her diet and growing like a weed. If you have any other questions, feel free to ask.

Here is how I make her food:
[caption id="attachment_224" align="alignnone" width="400" caption="The cast of characters"][/caption]

fresh ingredients:
1/2 cup yogurt
2 Tbsp left over oatmeal
1 Tbsp flax seed
2 Tbsp wheat germ
30 grams raw spinach
1 Tbsp baby prunes

frozen in ice cube trays:
1 Tbsp banana
2 Tbsp pear
2 Tbsp chicken
2 Tbsp sweet potato
1 Tbsp avocado

Place the above ingredients in blender along with 12 ounces water.


Blend on high.


Add a total of 12 ounces of milk. Ellie gets 50/50 whole milk and breastmilk.


I add two multidophilus capsules and some salt and a multivitamin.


Blend again, then divide into Ellie's 5 meals. Each meal she gets the same amount of food.


Our little organic baby :)


Additional Resources:
http://www.mealtimenotions.com/HomemadeBlendedFormulaHandbook.htm
http://www.blenderizeddiet.com/

Ellie Update

I am amazed to look back at the calendar and see that we made it through the entire month of November without any doctor appointments for Ellie! That has to be a record, and it is a blessing from God that she is doing so well.

We will more than make up for it the first weeks of December, though ;) Starting Dec 1, we will be seeing the Pulmonologist, a *new* Ear, Nose, Throat doctor, an Audiologist, a *new* neurologist, and the eye doctor over the course of two weeks. It will be exciting to meet the new doctors and catch up with old ones and see how Ellie is doing through their eyes.

I did receive word that Ellie's nerve biopsy was officially unsuccessful. The doctor had sent some tissue off to Mayo to see if by some chance he had gotten anything worthwhile, but no, there was nothing there to test.

Otherwise, Ellie is doing well. She is still dealing with her never-ending battle with congestion, but it is merely an inconvenience. She is growing like a weed, weighing nearly 23 lbs. I plan to do a post about her blenderized diet soon, as people often ask about it. I am always willing to talk about how well Ellie is eating! It is one way that I can take care of Ellie in a semi-normal way :)

We are excited for a holiday week. Thanksgiving day starts with Adam running the Turkey Trot at Calvin at 8 am! Then we will be off to my family for an early dinner. After that we will jump in the car and head to Chicago for a few days! Please pray for safety and health over the holidays. I will be praying for all of you as well.

resting in Christ,
Emily and family

Eyes Wide Open

Fall Pictures

Hi!

We are enjoying the nice autumn weather. There is no news to report regarding Ellie. I am trying to put the medical stuff aside for the time being. We are resting in God's sovereign arms and enjoying our beautiful princess.

Hope you are well!

Update

I'm sorry it has been so long! We have been really busy and there has not been any big news to report.

Ellie is doing great. The first picture above is of her in a "Little Room." It is a concept from Active Learning that we have been doing with Ellie. All of the stimulation encourages her to move for herself. There is lots of cause and effect because every time she moves she hits something. Unfortunately, she doesn't move, so she doesn't experience the cause and effect. We are still trying though!

Ellie is growing--almost too well! At her last appointment with the dietician, we decided to cut back her calories to try to slow her weight gain. She is doing so well with her blenderized diet. She is eating sweet potatoes, avocado, oats, wheat germ, flax meal, pears, prunes, yogurt, and chicken. We blend her food every evening and split it into 5 meals for the day. We are still trying to figure out the amount of calories she will need, clearly much less than the average one year old.

We heard back from the neurosurgeon that there was a sample sent to Mayo for testing. It was not the sural nerve that they wanted, but there must have been something there that they think could potentially tell them something about Ellie. We still don't know what the next step will be in testing [or not testing].

The boys had an exciting adventure last Saturday. They were given a special party at Chuck E Cheese from a church that wanted to bless our family. They had the full experience: pizza, cake, lots of games, and even some star wars toys to play with. The boys are so thankful for their special day.

We're Home

We are so thankful that Ellie woke from surgery well and we were able to leave for home quickly. It all seems routine now doesn't it? Ellie is resting on the couch. She should not be in any pain really; nothing a little ibuprofen can't handle at least.

The surgery did not go well. The surgeon spent more than an hour digging around in Ellie's ankle and was not really able to find the nerve! :( He told us that in textbook cases, the nerve lies beneath the vein that goes through the ankle. He could not even find the vein. He did say that he was able to find some tissue that may have had some nerve endings in it, but he was not very hopeful. He is sending those tissues to the lab to see if they are actually nerves. If they are, they will send them off for testing.

We're not sure what to think. We are still absorbing this latest curve on the road. It may mean the end to all the testing for Ellie, or maybe we will try the test again later. We will not be quick to try again though as we feel horrible that Ellie went through all that for nothing! We will have to see what the neurologist say. But for now, that's the latest... Thank you for thinking of us today and for your prayers.

Emily

Item of Praise

We got great news at Ellie's tests yesterday. She no longer has kidney reflux! The surgery was successful and completely prevents the reflux from happening. We are very excited to get this good news and offer our thanks to God who is the Great Healer.

We did not get news about the kidney damage, but at least it will not be getting worse because of reflux.

We are now looking to next week with Ellie's surgery and then a follow-up appointment with her urologist.

Thanks for your prayers!

Bummer

Ellie's nerve biopsy has been postponed until Tuesday, October 14 at 9 am. The surgeon needs to do an emergency surgery to remove a brain tumor. I guess that's more important than a nerve biopsy!

The conference was great. I learned some new ideas for Ellie and the philosophy of Active Learning is very interesting. The one-on-one session wasn't that productive mostly because of lack of time, but I still have a lot of ideas to try. I have to admit that I had my hopes up that this would be the key to unlock Ellie's disabilities, and that she would show immediate improvement, but such is not the case with her. It is hard to see the therapies working so well with other kids and then your child just lies there and falls asleep. But I know that progress may take months and years.

We are off this afternoon to get Ellie's bladder and kidneys tested. I'm not sure if we will know the results right away or not. I'll keep you updated.

Ellie News

We have a big week coming up next week, so I am planning ahead and trying to get it all down on paper.

Monday I will be attending a conference with Ellie. The conference is about "Active Learning" and will show us ways to stimulate her brain growth despite her severe physical limitations. The activities we learn about with use sound, movement, and cause-and-effect to hopefully give Ellie some feedback. Tuesday we will be having a one-on-one session to come up with an individual plan for Ellie. I am excited to come up with a routine for Ellie that will stimulate her and keep her occupied too.

Wednesday Ellie will have her bladdar re-tested to see if the deflux surgery was successful. It will also monitor the kidney damage and see if things are the getting worse or maybe even better.

On Thursday, we are back at the hospital for Ellie's nerve biopsy surgery. The neurosurgeon will be taking a piece of nerve from E's ankle and it will be tested to see if it is functioning properly. We're hoping the surgery goes off without a hitch like last time and that we can come home right afterward. We are not sure when we will get the results of the biopsy either.

So, the busyness continues. We're praying for a smooth week and that the tests and surgery will bring good news!

Dells Photos 2

On Day 2, we had a lazy morning at the condo, exploring the place and letting the boys play games at the arcade. In the late afternoon, we went to the outlet mall in town. We also went to Knuckleheads, and indoor game park with rides, games, and gocarts. Unfortunately, the boys started to suffer from "too much vacation," and we had to cut our time there short.

This morning (day 3), we spent quite a while at our favorite water park, swimming, riding the lazy river, and playing in the kids area. Noah even rode on the "purple slide!"

This evening, we are headed out for an early dinner. We hope to get back in time to spend our last evening at the water parks! :( We are having a fabulous time and will be sad to pack up in the morning.

Noah rides the purple slide

Dells Pictures 1

[caption id="" align="aligncenter" width="453" caption="Seth plays in the fountain"]

[/caption]

 

 

Ellie relaxes at the pool

 

[caption id="" align="aligncenter" width="453" caption="The boys playing in the kids' park"][/caption]

 

 



 



 

 

[caption id="" align="aligncenter" width="604" caption="the lazy river"][/caption]

What's new with our family

We had a fantastic party on Saturday! I want to thank everyone who came out even in the rain. We felt so supported and uplifted after the party.

Eleanor got a new carseat with her birthday money. She was getting too big for her infant seat and was starting to feel less supported in her seat. We searched high and low for a seat that would support her torso and head and were so happy to find one that works so well for her! She is very comfortable in this seat!



Today we have the appointment with the neurosurgeon that will perform the nerve biopsy. I am eager to hear when and how we will accomplish that.

We also have an appointment with Ellie's dietician this week. Ellie has been doing great with her blended diet, incorporating bananas, sweet potatoes, chicken, and yogurt into her diet. Ellie is the first child that her dietician will be working on the blended diet with, and she is impressed at how well Ellie is tolerating it. I'm not surprised though: real food for a real baby!

On Sunday, we leave for our vacation! We are going to stop Sunday night at Adam's parents to sleep. Then on Monday we are headed to the Wisconsin Dells. Adam's parents have a time share that we will be staying in: a three bedroom condo with full kitchen, whirlpool tub, fireplace, etc. The boys will love the waterparks and pools. Mom and Dad will love a break from housework and love spending time as a family. Ellie will love watching the boys play and being held a lot.

After we stay 4 nights at the time share, we will be returning to Adam's parents house. On Saturday the 27th, Adam and I, along with his sister and friends, will be running in a 5k to support breast cancer research. We are so excited to try out our new running skills in a real race!

So, that is what is going on with us. Enjoy some pictures of our family:

Happy Birthday Ellie!

Happy Birthday Ellie! We love you so much!

I want to remind you about the Open House tomorrow. We will still have the party if it is raining, just please pray it doesn't rain! ;)

You are invited to an Open House celebrating Eleanor’s first year of life. We would like to thank God for the blessings of this past year and our community of friends and family for their prayers, encouragement and support. Come and meet Ellie in person, squeeze her cheeks, and hang out with us while eating some snacks and cake on our back lawn. Please give us this opportunity to thank you in person for the significant role you play in Eleanor’s life.

Date: Saturday, September 13

Time: 2-5 pm

Location: The Vedrafamily House

Email me for more info or directions. We hope to see you there!

Invitation

You are invited to an Open House celebrating Eleanor's first year of life. We would like to thank God for the blessings of this past year and our community of friends and family for their prayers, encouragement and support. Come and meet Ellie in person, squeeze her cheeks, and hang out with us while eating some snacks and cake on our back lawn. Please give us this opportunity to thank you in person for the significant role you play in Eleanor's life.

Date: Saturday, September 13

Time: 2-5 pm 

Location: The Vedrafamily House

Email me for more info or directions. We hope to see you there!

Home Already!

We are home already! The surgery went really well. The urologist did the deflux procedure and also dilated her urethra to enable her empty her bladder more often. He said that she tolerated the surgery quite well. She woke up very quickly after the surgery because the anesthesiologist did not need to give her a huge dose of drugs. She was uncomfortable for a little while, but maintained her breathing quite well. She settled in with her breathing and tolerated a feeding right away, so we did not need to stay overnight. We left for home within a couple of hours after surgery. Ellie is sleeping peacefully right now.

We were not able to do the nerve biopsy today. It turns out that the biopsy requires a neurosurgeon, and they are not as readily available as a general surgeon as you might imagine. We do have an appointment in September with the neurosurgeon, so we are moving forward with the procedure even though we could not combine the surgeries.

Praise God that the surgery went so well and that Ellie was such a trooper. We were so excited to see her wake up with such spunk and alertness. Please continue to pray that the surgery accomplishes what it set out to do.

Thank you for your prayers and support today.

Love, The Vedras

Update

Hey everyone-

I'm sorry it has been long. We have just been busy doing normal family things like grocery shopping, walks, and watching the olympics. We spend a lot of time kissing Ellie's cheeks and thanking God that we are not in the hospital and that we are home enjoying time as a family.

Here is a picture of Ellie doing a normal baby thing-ready to go for a ride in the stroller. Adam and I have been going for jogs in the evening while Noah rides his bike and Seth and Ellie ride in the jogging stroller. It has been a lot of fun and a great stress reliever for the whole family!

Ellie has been feeling well since they put her on stronger antibiotics. We are all preparing for the surgery this week. I have been on the phone non-stop with doctors trying to coordinate a nerve biopsy for Ellie while she is under for the bladder surgery. A nerve biopsy was the next step in Ellie's testing. It was always understood that it was an option for testing "if Ellie ever had a surgery where she was put under anesthesia." Since there were no surgeries on the horizon, we sort of put it on the back burner. Well, all of a sudden this surgery is scheduled, so I started talking to doctors about getting it done at the same time. So, things are in the works, but it will take a lot of things coming together at the right time to actually happen. We will see.

The lab will be looking at the myelin in the nerves to see if it is normal or not. If there is a lack of myelin, it means she probably does have a peripheral nerve disorder and we will continue looking down that path. If it turns out to be normal, we need to change directions and reevaluate her testing path.

Please pray for the surgery on Thursday: that it will go smoothly, that Ellie's respiratory issues will not cause complications, and that the surgeons will be able to do the nerve biopsy at the same time. I will update after the surgery to let you know how things went.

Ellie's story is not finished yet. We know that God has great plans for her. We are just so happy to be along for the ride.

peace,
Emily for the Vedras

VUR Update

Well, we just got home from the doctor's office. Eleanor's bladder and kidney issues are pretty severe, and due to the fact that antibiotics are not being effective so far, the doc is recommending a surgical procedure. The procedure will use Deflux to create a flap to stop the reflux. You can check it out on their website. It is a pretty non-invasive procedure. It has a 90% success rate in a normal child, probably a lesser rate in a child like Ellie, but the odds are still good.

The surgery is scheduled for August 28. It will require an overnight stay only because they will need to monitor her respiratory issues and make sure she comes out of the sedation well. We are very thankful that there is a less invasive option for Ellie and that they were able to squeeze the surgery in so quickly. We hope this will all be behind us by the time cold season hits us. One hurdle at a time!

Updates

Sorry it has been so long! We have been very busy!

Last weekend was Noah's birthday. He is 6 years old! Adam's parents came into town to wish him a happy birthday. We had a nice Sunday dinner with members from both of our extended families present.

Tuesday was Election Day. Adam worked as an Election Inspector for my mom so we could make some extra money. It is always a busy day. He was gone until almost 11pm! The rest of us did not want to miss the Tuesday night concert at Meijer Gardens, so our friends kindly offered to help me with the kids while we were there. We had a really nice time.

Noah was loving on Ellie at the concert

Our friend Tammy held Ellie while she listened to the concert.

Thursday night, we noticed that Ellie was starting to have a fever. She was presenting symptoms the same as the two times she had UTIs, so we were pretty confident what it was. I took her to the Dr on Friday morning and was proven right in my assumptions. She was able to get a UTI while on a maintenance dose of antibiotic! Not good. She is now on a different antibiotic. We are very eager to find out what is going to happen at the Urologist. The appointment is Tuesday morning. I hope we will find out the course of action.

Adam has also been busy, working two side jobs this week along with the Election work. He works so hard to provide for all of us! Noah has been working hard, too. We officially started first grade this week. We had been doing reading all summer, but we added in history, science, math, etc. I am definitely more excited about it than him right now, but I know he will soon get used to it.

Well, that's it! I will let you know how the appointment goes on Tuesday.

peace, Emily

Ellie Update

Well, we got the results back from the tests on Eleanor's kidneys and bladder. The results were not good, unfortunately.

First, a word about the tests that were performed. The first test was a kidney ultrasound. It is standard procedure for someone who has problems with UTIs. They were looking for damage to the kidneys caused by the infection. They found grade three (out of 4) hydronephrosis in her right kidney. The left kidney is fine thank goodness.

Second, Ellie had a VCUG test. It is where they insert dye using a catheter into her bladder to see if urine is reluxing in to her kidneys. It showed a grade 4-5 (out of 5) vesicoureteral reflux into her right kidney. They often recommend surgery for children with grades 4 and 5.

We have referrals to see a urologist and a nephrologist to see what they recommend for Ellie. The test was on this past Tuesday and by Friday she had another UTI starting. She will now be on a course of antibiotics to take care of this infection, and then continue with a lower dose to prevent any more infections from occurring while we determine the course of action.

So that is all we know until we see the specialists. It is hard to know if they will recommend surgery on Ellie considering her underlying condition. We are really upset over these recent developments and that our poor baby has to suffer more. Please pray for wisdom for us and the doctors as we pursue treatments.

New Pictures and an Update

Things are returning to normal around here. We are all recovering from our colds, though Ellie is taking her sweet time doing it. We finally called into the doctor and asked her to prescribe Ellie some steroids to help with her breathing and clearing out her lungs. She really did handle this cold better than the last two though.

We did not get good news from the tests that resulted from her UTI. They showed that she is reluxing urine into her kidneys which can be quite damaging if it is bad. It also can be the cause of frequent UTIs. We do not know how bad the relux is yet, so we are not able to draw any long term conclusions from the test yet, other than we can add a few new doctors to her repertory. blah.

Ellie is now doing a six-week course of therapy at Mary Free Bed. They really are not doing too much new for her, but it does open us up to new contacts and opportunities. It is also something I can cross off my list that we tried. Then on to the next thing!

I want to thank you all for remembering us, even as you get busy with summer and other things in life. Your cards, comments and gifts mean so much to us and sustain us through this journey. We feel held up by your prayers and love.