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...