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.