Home For A Year

Hard to believe that we have been home from CHOP for a year. We came home on the 28th. Unfortunately we had to go to Akron 10 days later...but hey...at least we were in Ohio.

Haddie has been doing really well. No seizures since July 11th. And Hadassah is doing awesome on her feeds. She's taking about 12oz of food a day by spoon. She loves to eat and try different flavors. We think her favorite is apples with cinnamon in oatmeal. I think that tastes good too!

She is still working on head control. We finally got our insurance to approve a specialized wheel chair that will allow her to sit up more. This will really help her with head control and movement.

On Monday we went in for an EEG and an eye test. Her EEG looks the same as before...chaotic. But since she is doing great and is progressing we are not going to change anything right now. The good news though is that what we thought were "mini seizures" are actually not. Haddies tongue twitches sometimes and we thought it may be a small seizures. Turns out they arent so that's awesome. We have no idea what they are...so we will just chalk that up to being one of Haddie's quirks! Her eye test revealed that Haddie definitely can see. But a previous meeting showed that one of her eyes is weaker than the other. That's why it turns in from time to time. He thinks that since she can indeed see, it would be worth doing a surgery where they would strengthen that muscle in her eye. We are considering this.

Haddie weighs 20 lbs 8oz. She's maintaining her weight which is okay as we figure out the new feeding plan.

In other great news, Haddie has a new cousin. My brother Jacob and his wife Bethany gave birth to Jensen Jacob on 8-27.

Life is good. God is good. Thanks for remembering us!

Awesome 3 Weeks

It has been an awesome 3 weeks. Hadassah has not had one seizure since July 16th! Waking her up was a great idea and she has been very alert. That truly makes a difference. We have been super excited about the progress she has made even in the past 3 weeks. She has been moving more and more and her feeding has really taken off. She started off 3 weeks ago only taking maybe 6-10 bites off of a spoon. She now takes over 70 bites in a day.

The dietitian at Akron told us if she takes a certain amount in a day, 72 spoonfuls of stage 1-3 baby food, we can take away one of her feeding tube feeds. She has pretty much hit that every day for the past week!

God is good.

Haddie has been enjoying time with Kate's family who has been down this week visiting. Speaking of Kate's family, please say a prayer for Kate's uncle Tim's church who is on a missions trip this week out in Arizona. They are spreading the good news on a Navajo reservation.

Lastly, we have started a website to help others out who have had similar situations as us. Yes, there are others. We are not alone. Be sure to spread this site around so that we can encourage others with the love of God. www.scthope.com

Have a great weekend!