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. Seriously.the.best.drive. 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.

Wednesday, April 29, 2009

The visit with my sister...

Isabella with straight hair and Anna bear.



Anna and Abby, they are so cute.


Isabella, Hailey and Anna. We are missing 2 in this one :)


The magic House construction crew.

This so so funny. Poor Sophia being squished.

Hailey look so happy to be holding her...sweet stuff.

Tuesday, April 28, 2009

Sick Abby

My poor, poor baby.

It started out with stomach pain early Sunday morning and progressed to vomiting around 10 or 11am. We gave her 2 phenergan suppositories that did not work, around 7:30 I called the exchange at her pediatricians office and he advised us to take her to the ER. We got there at 8 and Abby was a big floppy mess. She was not talking, still dry heaving even though there was nothing left, slightly feverish, and non responsive. They started an IV right away and drew some blood. It took 3 times for the IV and she did not even cry, complain, fight back. They filled one of her hands with fluid by accident cause the IV didn't take. Finally once in she was receiving fluids. Some labs came back with some pretty awful numbers. Her white cells were 27,000. Her sugars were in the 20's and her bicarbonate and electrolyte's were at 7. They paused the IV and started pushing glucose to bring her sugar up and re started the IV after that was done. They decided to admit her at 10pm.
Once up on the pediatric floor they did the blood sugar again and it was still low so they did the glucose again.
Monday morning they drew all the labs again and her white cell was still the same and her bicarbonate and electrolyte went to 9 which was not a huge improvement nor within normal ranges. The doctor said she would not be leaving till they figure out what was going on.
Roto virus came back negative, along with strep, UTI, and bladder.
Nick stayed with her Monday night cause she wanted her daddy. Nick said the ER pediatric Doc came and visited and expressed her concern to Nick that she was worried about how quickly she got so sick. She mentioned things like autoimmune disorders, blood disorders, and metabolic disorders and wanted to make sure Nick discussed this with the regular ped in the morning. She said a normal child should not have had these types of blood results from less than 12 hours of vomiting. She said in the future if Abby is throwing up for more than half a day we are to go to the ER for hydration and that her body just couldn't tolerate any longer than that.
During the night I get these texts that make me laugh. from Nick

1:41am
"Play by play, Abby's asleep, she starts to wake up doing the pee pee dance in bed, tries to get up...but oh wait it's to late! Pee all over the bed and the kicker all over daddy too. Dad half asleep tries to untangle the cords like an immunity challenge on Survivor and wins! Gets Abby to bathroom just in time before round 2. Nurses rush in to change bedding like a pit stop at a Nascar race. Dad digs through bag packed by mom, scores with an extra panty for Abby. Abby cries for princess pj's but settle for hospital garb."

3:48am
"And were back. daddy begins to cuddle with Abby and oh wait...that's not Gatorade he feels, that's another round of pee all over bed and Daddy. Nothing left funny to say, I'm too tired, no boxers left, no panties for Abby. Now the nurse mentions pull ups."

5:25am
"3rd times a charm. Wake up, warning, pee pee dance, made it to the potty. Thank goodness, because there are no clothes left for either of us. As for me freeballin"

I was humored and thankful it was him and not me.

Ok so the Doctor comes in the morning and said her Liver is enlarged and she could feel it through her stomach. She ordered an xray and some liver tests. She said the liver tests take about 2 days and that is her White cell count was down we could come home this afternoon. Now we are waiting for the xray results and the CBC results. Abby is gaining her strength back and eating and peeing again so there is no reason to hold us for some blood results. We are going to follow up with the ped in a few days and are also being referred to a Endocrinologist for further testing to find why the liver is so enlarged.

Friday, April 3, 2009

My sister is on her way...

with 2 girls in tow and I am sure she looks something like this right about now.


Now me on the other hand look something more like this.


I seriously can't wait and even offered to meet here somewhere in KY or TN to ease the burden of her drive...I am still waiting on this offer to be accepted or denied.

We decided to tell the girls that she was too sick to come and would not be able to make it, so they will be so shocked when she pulls up.