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!