Butt Birthday and Another EEG

We celebrated Haddie's "Butt Birthday" on Saturday. A year ago last Saturday is when everything went crazy. They did a surgery to remove the teratoma while Haddie was still in the womb. That still blows my mind. Kate said this the other day at a talk and I hadn't thought of it before: Nicodemus asked Jesus if a man could be born and then re enter his mothers womb...Haddie's butt did just that!

We celebrated with friends and family had a great time! Her real birthday is on the 10th.

We went to Akron yesterday to get another EEG to see if the hypsarrhythmia is getting better. Unfortunately it has not really improved much. He said there's a higher voltage than before which isn't a great thing...not terrible...but not good either. Haddie has in the past week or so started to show signs of seizures again. That could just be her body losing the phenobarbital levels that we took her off of 2 weeks ago. He said that the good news is that they are just seizures...not infantile spasms. Spasm are really bad, seizure can be medicated and dealt with better. And since most of you probably don't have a clue what I mean by the EEG results, I looked this up to explain.

This is a normal infants EEG brain waves:

What Haddie's waves currently look like. 

What we rejoice over is that there are waves. There used to be nothing happening period when they did an EEG. Now there's too much happening which in turn cause the sub clinical seizures.

So our plan is to take the Sabril medication to its' max dosage and come back in 2 weeks to see if it's helping anything. They will repeat the EEG then to see what's what. By going to the max dose we can find out a couple of things. First, this should stop those breakout seizures she's been having and secondly, we will know for sure if Sabril is going to help her get past this hypsarrhythmia. If not, we may have to explore other options.

These seizures, according to the neurologist and a specialists we saw, is what is slowing Haddie down in development. While Haddie has made a few strides and can do some things that she couldn't before, if she were to get these seizures more under control it would greatly speed up her development.

So hopefully this max dose will work. We are very proud of the progress she has made and so are the therapy groups that see her on a monthly basis. But we would definitely be happy if that process could speed up too.

God is good. Please pray that this will work. We trust God in this. It's very hard sometimes. We so desperately want Haddie to grow and develop and learn. And that's a very slow process right now. But we will trust in the Lord and see what happens in 2 weeks at the next EEG.

Hope you are enjoying the spring! Here's some pics from the party.

 Haddie and her friend Parker.













Haddie's not sure about the cupcake icing just yet...

One Year of Frogger Blogging

I just happened to hop online tonight and take a look at the blog. I get overwhelmed every time I see how many of you have looked at these rants and writings...over 240,000 page views! I take satisfaction not in the massive number but more so in that those numbers represent prayers to God on our behalf.

Then I scrolled down and realized it's been a year. 1 year ago I started this as a way of getting prayers and information out about our struggles. Here's the first post if you never got the chance to read it: First Post.

I just write this to tell you all that we serve an awesome God. He is loving and He is just. I realize that is easier for me to write and say considering he found it in His will to answer our prayers the way we wanted Him to. That is all the more reason for me to praise His name today. And I ask you to please pray for those who are in the situation were in a year ago today.

God is good. All the time. And we are happy to have everyday with our Haddie. Thanks for joining us on this journey!

Foolin Around With An EEG

We had our EEG today. Turns out, Haddie is an alien. April Fools! Okay, now that we've got that out of the way, here's the scoop.

Haddie's EEG went pretty good. Not a lot has changed but it does present some good possibilities. There is activity in areas of Haddie's brain where there hasn't been activity before. The not so good news is that there's a bit too much. The EEG lines tend to spike in certain areas. However, this could just be lines showing up because things are starting to fire and Haddie's brain is figuring things out.

Dr. Enlow couldn't really say if it was good or bad but said time will tell. The spikes, while showing increasing activity, could still point toward infantile spasms. He is increasing the dose of her one seizure med and getting rid of the other. Our old nemesis drug, phenobarbital, will be gone in 2 weeks! It has served us well but it has also cause Haddie to sleep a great deal as well.

So all in all we are happy. Doctors in Philadelphia predicted that she wouldn't have any brain activity. Period. And they were right. For a while. But you never know what the brain can do....especially when 10,000 some people plus have prayed for it. She also doesn't have to come back to see neurosurgery for 6 months. We come back in 3 weeks to get another EEG with Dr. Enlow. God is good.

We also found out that we are still feeding Haddie too much probably. Our pediatricians opinion is that she needs to have excess weight to bank on if she would get sick again. The dietician we saw today agreed but not to the extent where we are. Haddie's weight for her age (17.6lbs) is in the 97th percentile. However her height (25inches) is in the 1st percentile. Translation: we got a round little girl on our hands. And while that may help her if she gets sick, in the long run it could hurt her. We know for a fact is has literally slowed her down some. She used to roll over and now she can't. So our plan is to cut back on how much fortification we put into her feeds.

Praise God on behalf of us today. It has been a good one. He continues to help our Hadassah and that is no joke. Have a great week!