September 2006

September 3, 2006 Wow, tomorrow Jacob will be three years old! Three! Three years ago he came into the world so tiny, so sick and now......he's beautiful, he's strong, he's still a Fighter!

Our trip to Kansas City went well. We left Wichita last Sunday and returned Wednesday afternoon (Thanks for house/dog-sitting Pam!). Originally, we planned to be home Tuesday, but our trip was extended due to a technical difficulty. See, Jacob was scheduled for an EEG Monday morning at 7:30am, but the hotel alarm, as well as the alarm on my cell phone failed to wake us. It probably didn't help that Brett and I were up very late with Jacob. To our surprise, they were able to reschedule the test for Wednesday- hence the extended stay. After rescheduling, we slept a little bit more before heading over to the hospital (Children's Mercy) for two other appointments. The first was for a "history and physical." We answered lots of questions, the doc took-a-listen to J and we were on our way. The next appointment, in another part of the hospital, was for pre-anesthesia testing. Again, we answered lots of questions and the doc took a look at J. After that, we went back to the hotel. We spend the rest of the afternoon and evening just hanging out, napping and spending quality time together. On Tuesday morning we arrived back at the hospital at 10am for Jacob's MRI. Things went very smoothly. Brett and I were able to stay with Jacob until they started the anesthesia....weird to see him moving and making noise then go limp...very weird. Thankfully a nurse warned us that would happen. The MRI took about an hour, then we watched as J came to. The nurses said he did very well. After a few minutes, we were allowed to leave....back to the hotel! For the EEG, we were to keep J up until midnight, then wake him at 4am so he would be nice and sleepy for the test. Well, Jacob decided he didn't want to go to sleep until after 2:00am so Brett stayed up with him while I slept. At 6:30am I woke and got Jacob ready to go. I took him for the EEG myself and let Brett get some sleep. J was very calm for the test, but didn't sleep. On our way out, the nice Tech gave J a fuzzy teddy bear! Too cute! We got back to the hotel by 9:30am. Since check-out time was three hours away, J and I took a nap with Dad before we started home. We will probably get the test results on Tuesday. And the coolest part? The call will likely come from the doctor himself and not a nurse! I love that! 

What a day....Thirty minutes after getting home from KC, I had to get back in the car and head to class (a 20 minute drive)! When I returned home, I pulled into the driveway, threw my keys and cell phone in my bag and proceeded to get out of the car to throw something in the trash. I had to walk by the passenger side of the car to get to the trash, so I planned to throw away the trash and grab my bag out of the passenger seat. Well, out of habit, I hit the auto-lock button on the door and shut it behind me.....uhm....ooops! I locked everything in the car- my phone, my purse, my books, my keys.....the only set of keys we have since our other car was stolen a few months ago. What a day! 

Birthday Boy.... Brett and I thought about having a party for Jacob's birthday, but because of busy schedules, finances and other things, we decided to have a small family gathering instead. Grandma Smith came to spend birthday time with him this weekend. She came to Wichita form Western Kansas Friday evening, spent the night, and stayed until mid-afternoon on Saturday. She really enjoyed her time playing, singing and talking with Jacob. For his birthday, Grandma Smith bought Jacob new shoes (which he really needed)! Four pairs, and they are all so cool! Thanks Grandma Smith!

While we were in KC, I took some pictures, but they didn't come out too good. Of course, I will post pictures of J regardless of quality because I am just so darn prod of my boy! Check out the latest on the Photos page!

As I said in the last update, feel free to email me (onestrongmother@yahoo.com) if you have any thoughts, questions or concerns about Jacob, I love hearing from Fighter Fans!

Have a happy and safe holiday weekend! 

September 7, 2006 After an uneventful birthday (we are celebrating this weekend), Jacob woke early Tuesday morning having a seizure. One turned into two and before I knew it, his lips were gray. That's when I called 911. What threw me this time, was that the Diastat didn't stop the first seizure. I gave the second dose and the seizing stopped by the time EMS arrived. Because his color wasn't good and he needed oxygen, we went to the hospital. Ironically, one of the paramedics had helped in one of the past episodes. At the hospital, Jacob was on oxygen and IV fluids and had blood work done to check his electrolyte and medication levels. Everything looked good, so we came home. We gave J Advil for his fever, which always follows a seizure, then we all napped. Later that day, J was acting like nothing happened. What a trooper! I called the neurologist after our nap and explained the episode. The doctor tried calling that evening, but I was in the Preemie Support Group meeting and missed his call. We didn't hear from him yesterday either and couldn't call the office because their phone system is down. I sure hope we hear back today. I want to hear about the MRI and EEG results too. 

On Wednesday, Jacob was feeling better so he went back to school. He had a great day! Here's hoping he stays healthy and on a routine!

September 12, 2006 Jacob's birthday celebration last weekend was a lot of fun. Joined by friends, family and neighbors, we feasted on tacos and later cake and ice cream. J didn't like digging into his cake very much, but did enjoy it when we sang happy birthday to him. He received some wonderful gifts (thanks everyone!) and had fun playing with everyone. Just hours before the party, he wasn't feeling well. He had vomited the night before and had some messy diapers so we thought for sure he'd be in bed for his party. He took a nap and woke shortly before guests arrived just as happy as could be, a very pleasant and happy surprise. 

Friday evening, J's neurologist, Dr. T, finally got in touch with me to discuss his test results. After calling my phone and Brett's, he got me at work. I apologized to him for not being able to reach me. Our "home" phone is my cell and I had it off when I was at work. Brett didn't answer his phone because he was out in the yard. Good thing I had my work number listed on J's records. The test results (MRI and EEG) showed increased white matter of the occipital lobe of the brain as well as definite irritability/seizure activity in the same region. What does that mean? He has seizure activity happening in the vision part of the brain- ironic isn't it? Yesterday I took Jacob to see his retinal specialist and asked him if the seizures could be related and/or effecting his vision loss. He couldn't give me a definitive answer. He did say it is coincidental that J has been having seizures since shortly after birth, and has had ROP since then as well. I asked if getting the seizures under control would effect his vision in any way and he said it was hard to tell. I'm going to do some research on this and see if there are any similar cases out there. On another note, J's right eye, the better of the two, still looks good with its retina completely attached. The fluid that had built up in the eye has reabsorbed, also a good thing. J seemed to react to the bright light Dr. V shined in his eye, but then didn't react a second time. I told him he does that at home as well. Dr. V encouraged the use of glasses on J as much as possible. Up to this point we hadn't been putting J's glasses on, but I'm willing to do whatever I can to encourage use of whatever vision he may have. Because J is coming out of his shell developmentally, this is a great time to get back into wearing glasses regularly.

I kept J home from school yesterday because he didn't sleep at all the night before. For the last week, maybe more, he's been going to bed at a good time, then wakes at 2 or 3:00am. He'll stay up until 5:00am, sometimes later, before going back to sleep, then I have to wake him at 6:45am for school. Because he didn't fall back to sleep until almost 6:00am yesterday, I kept him home. Brett and I aren't sure why he's on this crazy schedule, but it won't last long- Mommy is exhausted and can't take it much longer! 

In Mommy News... Last Friday I received a call from Rainbows United, where J goes to school, and was offered a job as a Respite Care Provider (I interviewed there about a month ago). The job is very flexible and will work with my school and hospital job schedules. I will have orientation on September 18th and begin working shortly thereafter. I'm looking forward to working for such a wonderful organization!

After over a year, I have finally update the extended Yahoo! album. I added 11 albums with over 200 pictures! Please check them out!

September 26, 2006 Oh boy, it's been busy around here! In the last couple weeks we've dealt with illness, a seizure, a rash and a bazzillion appointments. Ok, so just eight appointments (J and mom and dad), but that's still a lot. 

The seizure J had this week was very mild, but stressful nonetheless, more for us than J. Brett and I handle situations like that the best way we know how, but it's always stressful because we worry for Jacob and just want the episode to pass. So far, he has pulled through well and bounces back within a few hours as if nothing happened. We are still working on getting the new med to a therapeutic level and hope to be off the Phenobarbital within a few weeks. 

J has been sick off and on since his birthday. We kind of expected this when he started school. He's been stuffy, coughing, and last week, feverish. Brett and I have been giving him twice-daily breathing treatments- or more if he needs its- to keep his lungs clear. We've been able to care for his "crud" on our own, without taking him to the doctor which is a positive change from last year. We did, however, take him to the doctor this morning for another case of hives. The doc told us to give him Zyrtech until the rash is gone and he was fine to go to school. Yay for him...and us. Our "plan" when J went back to school was for me to work during the day while Brett slept, then we could spend time as a family in the evening. So far it hasn't worked out that way. J's illness and sleeping habits have been difficult and then I end up going back to sleep until mid-morning, sometimes till noon. I have faith though!

In mommy news... I have yet to start working for Rainbows. I had orientation on the 18th, but haven't been able to get to my doctor yet for a health assessment, which I have to have before I can begin working. I hope to start working early next week. In the meantime, I am getting plenty of hours at the NICU due to the high census (number of babies in the unit). Plenty meaning 15 to 20 hours per week instead of per pay period. It's been nice. Last Saturday, I had the day off and had several hours to myself, so I sat down and worked on my book proposal. It's been hard and I have let it sit for too long, but I hope that working on it a little each day will allow me to get it done soon. I really, really hope my idea hasn't already been submitted! I'll be sure to post an update when I put it in the mail.