Sunday, July 19, 2009
Benign Reactive Lymph Node! The words we were hoping to hear! They also tested her lymph node for ALPS(autoimmune lymphoproliferative syndrome) and it was negative as well. Based on the lymph node findings, they decided not to diagnose her with ALPS. Her blood work indicated the disease, but she lacks other clinical features. Basically, we follow up with them if she shows any signs that are relative to ALPS. The immunologist also felt that she had reacted well enough to the new vaccines and determined that she did not have an immune deficiency as previously thought. She is recovering well.
Her sisters have been amazing! Abby had to endure a 48 hour EEG study, which they thankfully let us do at home. It required placement of 25 electrodes on her scalp with a very stinky glue! They then wrapped her head in gauze and placed a battery pack on the top of her head. She got to carry around a black "purse" for a few days and got to play movie star by being videotaped 24/7. They gave her a pretty bandanna to wear. She was still a little self-conscious, but felt better when her sisters joined in with their own bandannas! The worst part was the two hours spent in the bathtub trying to remove all that glue!!
Although we had some great news this week, she is still looking at further testing and a likely diagnosis of a seizure disorder. She has been much more herself the last few days and has enjoyed more of her normal activities. She has a beautiful little twinkle in her eyes and a smile that can shine through the darkest of days. She has an ability to endear herself to anyone in a matter of seconds!
We have no doubt that she'll make through any challenge that is placed before her! Thank you so much for keeping her in your thoughts and prayers!
Sydni participated in an intermediate drama class this summer. On the last day of class, the kids put on the production "Big Bad Wolf". The Big Bad Wolf was put on trial and his victims were put on the stand to testify.(i.e. Little Red Riding Hood and her Grandmother, The 3 Little Pigs) Here's her most dramatic moment!
Thursday, July 9, 2009
Hi everyone. I promised to keep you updated on what's going on with Abby. This week we met with her neurologist for the first time. She told us that Abby's EEG showed that she had generalized abnormal brain activity. She ordered further blood tests, an MRI and a 48 hour EEG that we will start at home with her on Monday. On Tuesday, she had a lymph node removed from the left side of her neck. Everything went well. She has been tired and has had some mild pain the last two days, but is in good spirits. We should have the biopsy results in the next few days. Thank you for your fasting and prayers! Keep the prayers coming! Thanks to all those who have helped with our kids this week!
The most incredible fireworks show ever!! One hour of huge, boom after boom, amazing fireworks!
The pre-show entertainment!
Paul and Josh playing football before the Fireworks. That's a building in the background(the Milwaukee Art Museum), not a huge sailboat!
Berries white take flight. Leaves of three let them be. Our campsite was overrun with poison ivy! We had a few near misses. Joshua crashed his bike in the bushes and came out hysterical. Not because he was hurt, but because he knew exactly what he had fallen into! We washed him off good and miraculously came home without any rashes!!
Joshua hates to swing! However, he recently discovered tire swings and loves them! I'm sure it has something to do with his love of trucks!
Fishing on Devil's Lake. We had a great trip, in spite of a few "Griswald Moments!" We packed up the trailer to leave for Mirror Lake and realized the keys were missing. We unloaded the entire trailer, said multiple prayers, and finally called, as Josh would say, an OckSmith to make us new keys! Our last Griswald moment came as we were leaving Mirror Lake. Josh was saying goodbye to the boys in the campsite next to ours. He backed up and fell in their fire pit! Luckily they had not had a fire going since the night before. I should have taken a picture. He was covered in ash! We frantically washed him off thinking he had split his head open. Once we had him back to his little white self, we found just a small goose egg on the side of his head. Never a dull moment around here!
These pics are from an amazing nature walk we took while camping at Devil's Lake. We ran into our friends, The Baers, and the kids had a great time hiking and exploring together.
The scenery was incredible. Dark craggy bluffs covered with moss and ferns. Springs and crystal clear pools. The girls were sure they would spot a fairy or a gnome!
Abby wasn't quite up to the hike that morning, but found the perfect ride on her Daddy's shoulders!
Right in the middle of the trail was a perfect Tarzan vine. After Paul tested it's strength, the kids had a great time swinging and doing their best Tarzan yells!
- ▼ July (11)