The Vedra Family

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!

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

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.

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.

Well, it’s been a tough one around here. Just as Ellie was starting to feel better from her infection, the boys came down with colds. They ran fevers one night and then woke up with bad coughs. We just prayed that Ellie would not get it, but of course she did.

She has been handling the cold quite well, not requiring supplemental oxygen yet. She just has a lot of secretions and is coughing more than usual (which is actually a good thing for her!).

But, things took a bad turn again last night with her running a fever and then sounding like things were sticking in the lungs a little more. She is still hanging in there, but I am getting concerned again. And feeling a little frazzled.

Please pray for Ellie that she will kick this thing!
Thanks!

minus one day

Ellie woke up with a fever on Saturday afternoon. She was also gagging after her meals and looked pretty uncomfortable. We helped relieve some of her discomfort by venting her g-tube and helping her throw up out of it. We figured she had a stomach bug and prayed that it would pass quickly. She continued to spike fevers off and on for the next several days. She was quite lethargic and uncomfortable.

On Tuesday morning, when she still was burning up, I went into the doctor with her. We figured it was just a stomach bug, but since she had had a fever for more than three days, additional testing was necessary. We decided to test her urine first–easier than going to the lab for a blood draw.

It turns out she had her first UTI. I feel so bad that we did not catch it sooner, but we really had no reason to suspect it. I guess they are not uncommon in baby girls, and we are hoping it was just a fluke. There is a chance, though, that it could be a result of her weakness and that she is failing to empty her bladder. That would not be a good thing, and would lead us down a road we do not want to travel. So, please pray that this is a one time occurance. We will be following up with the doctor and finding out where to go next with this.

We are so thankful that it was not a respiratory illness and that Ellie’s breathing was very stable throughout her infection.

We started the antibiotics yesterday, and she is feeling much better already today.

Thank you for your prayers and concern for Ellie.

peace,
Emily

This weekend we released the butterflies that we had raised from caterpillars. They were mailed to us as five small caterpillars, and we observed them as they grew to be five beautiful butterflies. They even made the journey to Chicago with us! We learned a lot from these creatures. Caterpillars are amazing in that they know exactly what to do in the process of becoming a butterfly. They all did it within 8 hours of each other. They are also very messy creatures, as you can see from their habitat.After we watched them emerge from their chrysalides, we observed them for a couple of days and then released them into the great outdoors.

Ellie also went to her first baseball game this weekend. It was “Star Wars” night at the Whitecaps, and we couldn’t resist bringing the boys to see all the people dressed up as Star Wars characters. Darth Vader even threw the first pitch! Ellie did great. It is so fun to take her on these adventures.

Today was Noah’s last day of Kindergarten. I am so proud of the progress he has made through the year, especially with all the chaos and interruptions around here. He even had quite a few school lessons in Ellie’s hospital room!

Here is Noah’s work from his last day. When we started, he could barely scribble a circle and only knew letter names, not sounds. Now he can read the story on the left, and spell the words that I dictated to him on the right.

Eleanor has been doing great, hence no recent updates. She is healthy, breathing well without oxygen, and growing really well. We have been taking her everywhere, including a recent trip to Chicago for the weekend. She also went strawberry picking with me and the boys. She has been a really enjoyable companion for us all. She is always willing to snuggle and accepts all kisses graciously.

Last weekend we made the first trip to Chicago to visit Adam’s family. We were able to introduce Ellie to Adam’s grandma, who had not met her yet. We also spent some great time with Adam’s parents and sister. Adam’s mom, Pat, has recently been diagnosed with breast cancer. We praise God that he has lined up good surgeons and has made it possible for the lumpectomy to have happened already. We are praying for a good result from the surgery.

The boys have been enjoying playing outside with friends and were even able to go camping with my parents for a night this week. They had so much fun and did not want to come home. But Adam and I missed them! We didn’t know what to do with ourselves!

In other Ellie news, we have gotten the approval to start PT at Mary Free Bed. Please pray that something would click and Ellie would start making progress. Even little steps!-we would love it if she could just hold up her head. Other upcoming appointments include getting her hearing aids refitted, getting new leg splints (AFO’s), and visits to the ENT and pulmonologist. We do not expect any exciting news, in fact, appointments will most likely be dwindling down to once a year for most specialists.

Thank you all for your continued prayers and kindness towards us. To God be the glory~
The Vedras

Ellie is now 9 months old! She has had a really good month, and we have been able to get out a lot. We’ve gone to play-groups, grocery stores, parks, friends’ houses, and church with Ellie. We actually are starting to feel like a semi-normal family! We pray it will stay this way. We have also been without nurses on the weekend for about a month and it is going great! It is really nice to be all sleeping upstairs together, and Ellie is requiring a LOT less attention at night than when she first came home. We have a room set up upstairs for her across the hall from us. We still have a nurse coming during the week.

Ellie had her 9 month check up at the pediatrician this week. She is growing very well and weighs 18lb 1oz. She is still on a diet of completely breastmilk and will continue on that until she turns a year old. At that point, I will be starting a blenderized diet of whole foods that we will give her through her tube, mixed with breastmilk. The doctors have been quite impressed with how healthy she looks and how well she is growing. That makes me very proud

Ellie also saw the neurologist this week for a follow-up on the test results we got. The bottom line is that we are done testing for the time being. We have tested for everything that makes sense for Ellie, and she is officially a mystery. We are unsure what to feel about this. It is hard to just stop looking, but we are pretty certain that there is nothing else to look for-not that we have come across in our research anyway. The neurologist said that if she is undiagnosed, we need to assume the worst: that it is a heredity disease and any future children would have a 25% chance of being affected. We are praying for future research opportunities to arise so that some day we will know what Ellie has.