Merry Christmas and a Haddie New Year

So I said I was going to update more in my past post. Turns out I lied. Sorry. But I still love you...and I know you still love Haddie so I will get a pass this time :)

The EMU stay ended up being a good thing. We found out she was having little seizures and they were happening more frequently. We took away a med, added a new med called Onfi, and things are much better. It makes her a little sleepy still but she's starting to come out of that. And we've seen a lot less of those little seizures.

We keep working with her on head control and other basic motor skills. It's a daily chore but one we don't mind doing. There's a million and two exercises we could do with her but we try to focus on a few simple ones each day.

She's eating like a champ. And drinking. We thicken water just a bit and she slurps it down pretty well. She takes 500 calories of food off of a spoon each day.

We've enjoyed time at Christmas the past couple of days. Haddie likes to hang out with her new cousins Jensen and Sylvain. She was a good girl this year so Santa came to see her. She wasn't so sure about him though...

 Hope you all had a Merry Christmas. God is very good. We hope you remember the best gift of all...the sacrifice of his Son. Merry Christmas and a Haddie (happy I mean) New Year!

EMU Stay

It has been a while since I have updated...and I have received the complaints about that. Sometimes I feel like Haddie is a celebrity and I am her PR manager. But to be honest, I am honored that you are still following our story. So I will continue to update. And maybe a bit more frequently.

A good bit has happened since her shunt surgery back in October. On Nov 25th we had an eye muscle strengthening surgery. This was to help with her one eye that was slower than the other. Other than us forgetting to tell them not to give her morphine and her being asleep for 24 hours afterwards making it impossible to give her her meds...it went well. Her eyes are improving and she is tracking a lot better now.

We are currently in the Epilepsy Monitoring Unit at Akron Children's Hospital. She's been having little episodes more frequently these past few weeks. When they come on her Haddie's face gets very flushed, her arms go stiff, she gets a panicked look on her face, and her tongue thrusts rhythmically. However, they only last for 10 seconds to a minute. We had caught a milder version of this a few months ago on an EEG and it didnt come back as a seizure. But they have become more pronounced now and our neurologist seemed to think a 3-4 day continuous EEG monitoring would be good for her. So I checked in with her yesterday. And she was a good little girl and had 5 of them for them to record. we figured she would be a booger and not have any this week.

Turns out, they think they are seizures. We dropped a medication last night. I am currently waiting to see the doctor and see what the plan is. They may add another med. The plan is to watch her until Friday but if they see what they want to see we could get out earlier.

Life's good. Haddie really is doing well and while we dont like seizures, these a way milder than what we dealt with in the early summer. But hopefully we will try something that can fix these little ones too. I will update with the results later on.

Seriously, if you are still following our story, thank you. I appreciate your prayers and thoughts for my family. God is good.