Monday, May 18, 2009

For my dadddy...

I am such a slacker. I have been meaning to give you these pics, and kept forgetting. Grandpa and Grandma and Aunt Denise and Uncle Todd and Kimberly all came for a visit while Yaya and the girls were here and these are the pics I got.

Nick is such a dork, look in the background you can see him slouching down to get in the pic and have no one notice. Camera hog!

Uncle Todd and the girls.

Aunt Denise and the girls.

Grandpa and Sophia.

Anna and Grandpa. I love this picture, the way he is looking at her and how she is looking up at him.

Get away

With all that we have had going in the last few weeks we needed to get away. We have close friends that are like family in Cincinnati and decided to head out for a visit.
It was about a 6 hour drive on Mothers Day weekend, and it was the best drive ever. Sophia slept most of the way and was a dream baby. Bella and Abby were wonderful and so good. They watched movies and talked and relaxed. Nick and I talked and enjoyed each others company. We have had little to none alone time together since we moved here and it was almost like a date and we got a few hours in the car to talk and actually not be interrupted. We laughed, made jokes, and just enjoyed the peace and quiet.
The weekend was so nice as well. Even though the house was full, it reminded me of being home and having everyone around. The noise from all the kids was actually relaxing to me, I miss all the noise of my nieces and nephews, my sisters and brother in laws, my mom and dad. Every weekend in FL we had a BBQ and my house was filled with hustle and bustle, laughter, noise, children running and playing. I miss that and we got a small glimpse of what it used to be.
Dorothy and Blue were the best hosts and made us feel comfortable and at home. Being in their company is always fun, and full of good conversations. It was a long awaited visit coming, they have come to our house in FL a few times, we have met for vacations in Orlando for Disney, a cabin in the Smokey Mountains in TN, and we have yet to drive to Ohio to them. I loved seeing where they live and the area they are in.
I am so thankful to have real friends that are true to you and love you for who you are. There are few people like that and they are.

Abby girl...

Abby's Doctors and a few specialists all agree that Abby has what is called "Glycolic synthetase deficiency" also known as Glycolic storage disease. There is not a whole lot of information out there on this, especially in terms regular people can understand. The Doctor explained it to me like this. She is missing an enzyme in her body that should be allowing her to store carbs, energy from food, because it is missing when Abby has any period of fasting ie. sickness, picky eating etc. she deteriorates quickly with no stores of energy. It affects her liver through the processing stage and that is what makes it enlarged. When her body returns to normal eating, she regains her strength and her liver decreases to normal size.
SO...the main concerns here are slipping into a coma in her sleep from no carb storage, and when she gets ill, she gets sick quickly. Liver damage can occur overtime and that is something we need to monitor closely.
Moving forward we are to head to the ER when she has thrown up more than 3x, and we have an appt. with a genetic Doctor on May 28th at 1pm to figure out what we need to do in long term care for this disease. There is no cure, or special pill that will make it go away. It is something we will have to work with. From what I understand it can me maintained through diet. We can prolong the liver disease process through the diet also. I am hoping we can gain more information from this specialist and feel more comfortable moving forward.

Friday, May 1, 2009

My sweet girl...

We are waiting on some test results for Abby. The Doctor called last night and said some preliminary results were concerning and the Lab Physician wanted to add some more tests onto what was already ordered.
We will now have to wait till Monday to get all the results back.
I am praying for total healing of her liver and body, and anything that may be attacking her organs. I am praying for knowledge as Nick and I choose Doctors and specialist. I am praying for a steady head to remain focused and positive.