Thursday, May 20, 2010

playing catch up

Here I am once again behind in my journaling & I really want to catch up. So much has happened that I haven't shared. I don't know where I left off last. Oh yes with Disney & I didn't even finish sending pictures. I will do that soon!
Last week was spent finishing up Sweet Feet for Brody's March for Babies t-shirts. My sweet friend Kathy who is Brody's Aunt asked me to design & make their team shirts for the March of Dimes walk. Well I had a blast. I loved it so much. It was so much fun to spend that extra time with Kathy too. I have missed her this week. They did an amazing job raising money for March of Dimes in memory of Brody too,
Friday Marlee Anne & I got to go to the Presbyterian Church Preschool Cystic Fibrosis Walk. It was so much fun seeing the little children march and yell Cure Found. It was in honor for our friend Torianna & the sister of a little boy that is in Mackenzie's preschool class.
On Saturday all six of us went to GA Tech for the GA Great Strides walk for Cystic Fibrosis. It was really a neat experience. I was touch at how the common bond & cause made people rally together & seem like close friends. I met some very nice families. Several of our neighbors participated so it was fun to walk with them & get to know them better.
Marlee Anne & Mary Elizabeth really enjoyed it but Michala was the funniest. There were all kinds of dogs there. All shapes & sizes so she was in heaven. There was a little bitty Jack Russell that thought he could take on anybody. He sounded like he could. Then there was a huge mastiff that was the perfect height for Michala. There was Benny the little Pekinese that was way to hyper for Michala. We all fell in love with the English bulldog named Hero.
On the way home Mike & Marlee Anne went in the Rockdale Extension office for the bug show. Marlee Anne ate a chocolate covered cricket & became a member of the "I ate a bug" club. Mike & Marlee Anne both did the bug spitting contest.
I feel like there have been more activities I am leaving out. I will think of them & share them later.
We have been weaning Abe from his vigabatrin. He has been having an increase in seizures but not bad enough to stop the weaning process. The withdrawals he is having from coming off the drug however is horrible. That's bad enough to put him back on but if we don't push through we will never get him off. I can honestly say this has been one of those really hard times in my life. The kind that is wearing on my patience. I am trying to stop & pray each time I have such a hard time with it or rather when he is having such a hard time with it. Prayers would be greatly appreciated!
On a good note he has been a few days without oxygen. Occasionally he will drop. We are still scheduled for pulmonology next week. He is also much more active since the wean. Smiling at appropriate times not just when he is having a smiling seizure. He is getting very vocal too. Trying to focus on the blessings of getting off this med instead of the challenges.
Michala's seizures are increasing & we are not really sure why. Could possibly still have a lot to do with hormones.
Mary Elizabeth is doing well & we are so very thankful for that. Marlee Anne is counting the days until her next commercial shoot. No not really but she really did enjoy that. She has been very busy helping in the garden.
While I am asking for prayers could you please add our little friend Ricky. He is in his final days of his cancer. His family has brought him home to celebrate his life & enjoy these last days. Please pray for his family. This is one strong little boy that has taught me much in his short life. He is a dear friend of Marlee Anne's. While it is hard for her to let him go she knows without a doubt that God has him & he will no longer be in pain when he gets to heaven.
One last prayer please. Our friend Tyler recently decided not to endure anymore cancer treatment has a tumor on his back. It is pressing & hurting him very bad. He has agreed to radiation to help shrink it to give him some relief. Today he had two radiation treatments. The first was very painful & I haven't heard about the second one yet. He also has pancreatis & cannot eat. He is very hungry but his pancreatis is getting worse. His blood count was low so he had to have a blood transfusion today. Please pray that makes him feel better.
Sorry to throw so many prayer request your way but these two boys have been heavy on my heart along with their mommy's too. Thanks for joining us in prayer!
This email was typed in bits & pieces in between the screams so please overlook all the typos that I am sure are there.

No comments: