Great News!

Madeline's labs are finally getting back to normal. She played the Wii a little and even took a walk!! Her bicarb is up to a 20.
Once her pain goes away completely, hopefully she will start eating!

We love our Maddie for being the tough trooper she is.

We are also thankful for the love and support given by out friends and family.

Good morning! Hopefully today will be a better day for our Madeline.

Yesterday was difficult. Trey and I noticed Madeline was not looking good and breathing heavily...so we requested more blood draws, only to find out Madeline's bicarb had dropped to a 12. She was acidontic at this point. So i called the metabolic doctor on call to come to our room...because i wasn't about to mess around with these low levels. Madeline could barely keep her eyes open due to the lethargy she was feeling from her acidontic state. We had doctors and nurses running around changing fluids and giving her meds to try and raise these levels. I hate to think about what would have happened had we not requested these blood draws. ALWAYS go on your instinct as a parent. Never doubt it!

This morning, Madeline's bicarb is at 18. Much better than before. She seems to be in less pain than yesterday. We are hoping to get her bicarb in the 20's and be on our way to a recovery.

Thanks for all your support and love!

Tuesday

Madeline is about the same today...we are starting some light feeds to try and speed up her recovery. She is still fighting some pain. She has been vomiting some, so we are trying to decide whether to stop the feeds overall for a bit. We are watching her bicarb levels, which took a little dip overnight. They went from a 23 to a 19. It is important to keep these bicarb levels up to reduce the risk of acidosis. The fight continues....

On another note, we are in a nice new room, with a great view of Dallas. Our doctors and nurses have been wonderful, which always makes a difference during our stay here at Children's.

Monday, May 2nd 2011

Madeline is here at children's...she is suffering from a bout of pancreatitis. we came in Saturday with severe stomach pains. Her liapase and amylase levels were sky high, which is a sign of pancreatitis. She had been suffering from fevers all week, so we think that caused her pancreatitis.

Madeline's levels are back to normal this morning, so we now wait for the pain to subside. Thank you for all the love and support! I will update daily.

Madeline's Blood Work

What a glowing report back from Maddie's blood work. Her blood levels are the highest they've ever been (9.9) and that means no I.V. iron treatments. Yeah! Her kidneys also are continuing at the same levels and are not seeing any reduction in functioning which is a great and welcome bonus. As always, thanks to all the tremendous doctors at Dallas Children's for all their work!!!

Homebound School Going GREAT!!!

Homebound school is going great for Madeline. She is so lucky to have such a wonderful teacher in Mrs. Robyn Baker. Her and Madeline are official buddies and Maddie's learning has accelerated tremendously. Thanks Mrs. Robyn!!!!

Great check ups!

Madeline had many check ups recently. They all went really well!

The first one was her nephrology apppointment. Her kidneys haven't gotten any worse since her last check up a year ago. This is great news! We want these kidneys to hang in as long as they can.

The next appointment was her hematology appointment. She had a higher blood count she's had in years. So that is also good news.

Her growth is finally stabilizing and she is gaining weight.

Madeline is enjoying her homebound teacher and doing great!

Yay for positive check ups!