Baby Update

Today we had the excitement of going in for a detailed ultrasound of the new baby. It was confirmed that we have another GIRL entering our family :)

The ultrasound went really well. Baby girl looks really healthy so far! The doctor seems really optimistic that the baby does not have the same symptoms as Eleanor. He thinks at this point the risk for the baby is really low.

She was moving a round quite a bit and we saw the mouth open and close a couple of times. We also saw her stomach which showed she has been swallowing. That was the most exciting part for me and Adam. We also saw the ankles which look really normal, as opposed to Ellie's "foot drop" which requires her to wear special foot braces.

The only thing to report was a very slight enlargement near her kidneys but it could be a result of an underdeveloped ureter system or something like that that a lot of babies have at this gestation. Doc was not too concerned, and I'm thinking it is one of those things that make people worry that really don't mean anything. We will pray for that issue to resolve.

Thank you for all of your prayers and encouraging comments so far. It really feels great to have the support of our family and friends. We put our trust in the Lord and in his goodness. We are so happy for the gift of another baby girl. We will keep updating as we learn more :)

More News

Ellie News
We have received all the results from Ellie's recent testing. All negative-Surprise, surprise :) We also got her MRI results which showed that yes, she still has white matter loss, but no, it is not getting progressively worse. It was not a surprise to me or Adam, as we know she is not getting worse, but I think it will be a good piece of information for the doctors. We go to the neurologist next week to go over all the results in detail and make a plan from here.

Ellie also had her first visit to Genetics. They really should have been following her from the beginning, but alas, some things fall through the cracks. We really did not learn anything new at this appointment, but we now have another smart doctor following Ellie's case. The Geneticist has already contacted various colleagues around the US to see if they have any ideas about Ellie's diagnosis. We'll let you know if anyone comes up with anything.

Ellie had a cold the last couple of weeks, and we are very happy to report that she kicked it without any additional meds or even a visit to the doctor! She handled this cold very well and it brings hope to us that she will be able to continue to do that in the future. Yay!

The House
The house is now listed for sale! It was a lot of work getting it ready, but it was very satisfying to see the end product. You can see the listing here. Let us know if you know anyone who may be interested ;)



Other news
In other news, our family is expecting a new addition at the end of August! We are all very excited, but of course a little nervous as well. I am being followed closely by a team of doctors, but we are not sure they will be able to tell us anything, as Ellie's condition is not really detectable by testing. We trust in our good God and in his providence. We know that he has a plan for our lives, one that is for his glory and for our good, no matter the health of this new baby. Please pray for our peace and for this unborn baby.

Family Update

I'm sorry it has been so long. We have been so busy!

Ellie has been doing great! She has had no major illnesses since the bad respiratory bug she had over Christmas. She has been really alert and smiling a lot and just plain interacting more than ever. She is such a joy to the whole family, and often we will just *have* to stop and kiss her cheeks while going about our daily routines. This past week Ellie went to the hospital for two tests. The first was a kidney test that would tell how well her kidneys are functioning. You may remember her kidney reflux that was causing all of her UTIs this past summer. They caused quite a bit of damage to the right kidney, and this test will tell us sort of a baseline of how well the right kidney is functioning. She also had her first MRI since last year at this time. We are hoping the MRI will tell us more details about the problems with her white matter and myelin in her brain. We will know the results within a week I hope.

The boys have been doing great. Noah and I are still doing school pretty regularly. He is reading easy readers and doing addition in math. We have been learning about animals and the human body, as well as the Greeks and Romans. It has been a fun year so far, but there is still much to be done before Summer.

Seth turned 4 years old last week! He thinks he is 6 and wants to do everything Noah does. They are the best buds and spend hours playing Legos, Playmobil, and anything to do with Star Wars.

Adam has been busy with work and his side business, Fishbone Technology Services. He has also been going to the gym every day during his lunch hour and we are proud of him for meeting his goals.

The whole family has been busy with some other big news: we are going to put our house up for sale this Spring! We of course have been thinking about it off and on since Ellie was born. We live in an older 2 story house that no matter how we look at it will not accommodate Ellie's increasing special needs. After going back and forth on the issue, we really feel like now is the time to try to sell. So, if you know anyone who wants an awesome house in Alger Heights, let us know ;) Also keep your eyes open for ranch-style houses that can be adapted to become barrier-free.

It is a super busy and exciting time for us, and we look with anticipation to the Spring for more exciting things to come. We have a new niece and nephew coming in the next 4-6 weeks home from Ethiopia. My brother and sister-in-law and their 2 children are adding to their family and we can't wait to meet the new children.

So that is the news. We hope you are doing well and please forgive us for not updating sooner.

The Vedras

Ellie Smiles!

This is truly the most exciting news we have had since we first heard Ellie's voice. It has been a few weeks since we first saw Ellie smile, but it was so infrequent-- and obviously does not look like a "normal" smile-- that we thought we must be kidding ourselves. Now, over the last week or so, she is doing it consistantly, always before bed and sometimes first thing in the morning.

I finally caught it on video for you. The video is a compilation of two occasions-first, in the morning, where the lighting is good but the smile is less large, and then second, before bed, when she is cooing and smiling big, but the lighting is poor.

Enjoy, and praise God with us! There is nothing like a baby's smile!

Cleveland II

We had a great time as a family on our adventure to Cleveland. The boys are great travelers in the car, and Ellie did great too. The trip takes around 5 hours. The way there took more like 6 because of the weather. The roads near Cleveland were really bad, and at more than one point I worried that we would not make it in time for the appointment! But we did, just in time.

The boys were well-behaved in the doctor's office. The appointment took 2.5 hours! But the doctor complimented them on their patience. We were very proud of them, especially after riding 6 hours in the car and no lunch.

After the appointment we headed to the Holiday Inn. It was a really nice place to stay. It was quite empty and the staff was very nice. We had the pool to ourselves the entire time, including the hot tub. In the morning we ate at the hotel restaurant at what turned out to be a free breakfast buffet! We had time in the morning before packing up and leaving to enjoy the pool again. The boys really enjoyed our "vacation."

Cleveland Update

We just got home from another visit to the Cleveland Clinic to see yet another doctor, Dr. P. in hopes of getting a diagnosis. Dr. P was very helpful, and we were quite impressed!

It is hard to explain everything about Ellie's condition on the blog, but if you are interested in hearing all the details, please ask and I will explain to the best of my ability!

Dr. P agrees with what we know so far: that Ellie's has a problem with her myelin. The purpose of the myelin is insulation around the nerves to increase the speed and prevent interference of the impulses. We already know that Ellie is receiving impulses at about half the speed of a normal child her age. We know she has a problem with the myelin.

Dr. P also gave us a nice little talk on DNA and how the researchers look at it. Unfortunately there are no tests that can quickly look at all the DNA and look for the problem. But, there is a test that looks at a pretty significant chunk to see if there is anything missing or added to the sequence. For some reason Ellie has not had this test, so that is the first order of business. Dr. P thinks that Ellie has a mutation somewhere in her DNA, it is just a question of where. It is also a question of whether she got that mutation from me and Adam, or whether it was a spontaneous mutation.

Dr. P has a chart of all the likely tests that could be run and he crossed off the ones we had already done. He definitely spoke my language! He was so organized and was able to spell out everything we had done in a clear way that no doctor had done yet LOL! So, we have a few other tests that had been overlooked that we should run just as a matter of course. He did not think any of them were actually that probable, but they should be run just so that we can check them off.

So basically what I am trying to say is that we now have a clear and logical path in our testing. No more shots in the dark so to speak. We will start with the new DNA test. We also may be repeating her MRI, along with some other testing.

Another piece of news is that Ellie's local docs are all meeting next Friday to talk about one thing: Ellie! They are going to brainstorm and talk about a course of action for our girl. So things are definitely moving forward!

We still do not know much about our mystery girl, except that she is a gift from God and a blessing to everyone she comes across.

New Videos

I wanted to share some new videos with you. Ellie has been vocalizing a lot lately. We continue to be amazed by her voice and so thankful for her Passy-Muir valve.

This first one shows how she is experimenting a little with different sounds. Sorry it is so shaky, I was holding her in one arm and the camera in the other.



This next video is of Ellie crying. We used to think that Ellie really did not ever cry hard. It turns out we never knew since she makes so little facial expression and before we had her Passy-Muir valve we could not hear her. It still amazes me to hear her cry, and we might be a little too excited to hear her cry sometimes!