Monday, May 1, 2006

May 2006

May 8, 2006 I have returned from my week in sunny southern California! I missed everyone, especially my fighter, very much! While I was gone, Jacob had a mild seizure, but did not need to go to the hospital. For the last few days he's had a runny nose and is drooling quite a bit, probably due to teething. He's in a great mood and his sleeping habits are getting better! A great thing for mom! 

Brett goes back to work tonight, and I go back tomorrow. The vacation was fun while it lasted! Now we look forward to J's home therapy and me starting school in June! Busy busy!

May 12, 2006 Things are getting busy in Fighter land! On Wednesday, Jacob had his first home therapy session since leaving school in March. His VI (Visually Impaired) therapist, Leslie, came to see him. He was being stubborn, but Leslie enjoyed her visit, as she has worked with Jacob since he started at Rainbows United over two years ago. Jacob will have two more therapy sessions next week, with his speech and occupational therapists. 

Before I went on vacation, I started recruiting staff members from the NICU to form a team for the March of Dimes Walk America event (I am the team captain). Much to my surprise, very few have signed up so far. I was feeling rather discouraged until yesterday when I spoke to someone at the local MOD office. Apparently, I am not only heading up the NICU team, but the entire hospital! Wow! From what I was told, in years past, it was always "Team Wesley Medical Center," not "Team Wesley NICU" as I first thought. How exciting is that?! Ok, so now I'm really feeling the heat! I have three weeks to get the word out around the hospital and get more people to join the team and/or donate funds. And of course, I am honored to be doing this and raising funds for such an important cause!

I have sent out emails asking for donations, but if you did not receive one, and you would like to sponsor me, please visit my personal Walk America web site: Please email me at: if you have any questions! Thanks so much!

More updates and pictures to come!

May 22, 2006 On Mother's Day Jacob did the most amazing thing.....he stood up and walked forward 4 steps!! He did it all by himself! No hands held! I am SO proud of him!! This weekend, Jacob spent a night at my parents house and did it again, only this time going about 5 steps! I know he will be walking in no time at all! :)

The March of Dimes walk is just two weeks away! Thanks to all who have sponsored me! Your support is so VERY important! I'm still not having luck recruiting people at my work, which is pretty disappointing, but there's still time. I will keep you all posted on my progress. For a list of my sponsors, please see the home page. 

Jacob has had a runny nose for several days now, but we are watching him close and keeping up with the breathing treatments, so it doesn't turn into anything serious. It could be due to teething, a cold, or even allergies, we're not sure! 

Jacob's home therapy hasn't been going too well. For his first visit, he was irritable...the second he wouldn't stay awake and the latest visit...we woke when the therapist arrived...oops! We blame that on Jacob staying awake until after 4am the night before. He has two visits coming up this week, which we hope will go better!

May 28, 2006 We had another scare in Fighter Land... Early Friday morning, 5:00am to be exact, Jacob woke having a seizure. I gave him a medication that is supposed to stop the seizure within two minutes, but it did not work. The seizing continued, with shiver-like shaking and his eyes rolling up. With no car, I had no choice but to call 911. Thankfully, my sister Pam was sleeping over, so she watched the house and the dog for me (and later brought me clothes since I was in my PJ's). The seizing stopped shortly after EMS and the fire department arrived. EMS started an IV and oxygen on him before we headed to the hospital. Once at the hospital, his fever spiked to a boiling 104.1 degrees. It was very scary. Brett met us there from work. After checking his Phenobarbital level (which was normal) and getting his fever down with Tylenol, they let us take him home. Below are pictures I took on my cell phone of Brett holding Jacob in the hospital bed.

While sitting in the ER with Jacob, Brett and I talked to the nurse about how we are not pleased with the care Jacob is receiving from his Neurologist (the only pediatric neurologist in Wichita). She couldn't say much, as she could get into serious trouble, but she did tell us that she is dating a pediatric medical resident and he sends his patients to a neurologist in Kansas City. She took my email address and will be sending me the name of the doctor. As soon as I know the name, I will be making calls and getting J scheduled as soon as possible. I have a motherly-instinct feeling that something else is going on. I want them to run tests, I want them to do a sleep study, since he has the seizures at night. I want to get to the bottom of these episodes. 

This coming week will be a busy one for us. I will be attending a conference, Premature & Medically Fragile Infants & Toddlers, on Wednesday and Thursday at a local hotel. Thursday Brett and I will be speaking at the conference about Jacob's transition from the NICU, to home, then into Rainbows United care. Then Saturday, the 3rd, Brett, Jacob and I will be walking for MOD, then the following Monday....I start school!!! I haven't been in school for several months, I am looking forward to getting back!

Please keep us in your prayers! Thanks so much!