Monday, June 30, 2008

Of Butterflies and Baseball

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.

Thursday, June 26, 2008

Noah's Last Day of Kindergarten (and other updates)

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

Friday, June 13, 2008

9 months old

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.

Friday, June 6, 2008

More Negative Test Results

We really thought we had found an answer for Eleanor. It wasn't a great answer, but at least it would be an answer.

But today we found out that the latest batch of tests came up negative. We were testing for a family of peripheral nerve disorders under the Charcot-Marie-Tooth umbrella, along with one that really sounded like Ellie, called Congenital Hypomyelination Neuropathy.

We knew we would be happy with the results either way. If they were positive, we would finally have an answer for Ellie and could move onto the next stage of research and knowing the future. If they were negative, there would still be a chance that her disease is an isolated incident and would not affect the future of our family.

So, we praise God that we were able to find out the results of the testing (finally) and press on to find the answers for Ellie and our family.

Monday, June 2, 2008

7 years

7 years ago today, Adam and I began our life journey together. Sometimes I look at that picture, and I want to tell the kids in the car to take off and never come home. They have no idea, do they? I'm sure I'm not the first person to feel that way, nor the last: life often takes us places we never would have imagined-both good and bad.

But mostly when I reflect on that day 7 years ago, I think about all that God has done to prepare us for our journey. He built our marriage strong upon his word, knowing that we would have bigger struggles ahead. One thing we have always been certain of: that God is present in our marriage and he will be with us no matter the trials that come our way.

One of the verses we had for our wedding day was, "The LORD has done this, and it is marvelous in our eyes." psalm 118.25. Without question, that is the verse for our lives. We often question "WHY" God has done certain things, but we never question THAT he has done it--and that he has done it for his own glory. What could be more marvelous than being part of God's plan and bringing him glory?

Adam has been such a support and strength through this trial. He accepts Ellie as she is, showing her love and grace everyday. I couldn't have been blessed with a better husband. My prayer is that our family will show God's glory everyday.