August 2006

August 3, 2006 Jacob is back to school half-days and is doing great so far. He will continue half-days until the regular school year starts on the 18th of this month (at which time he will move to a full time slot). We drop him off at 9am and pick him up at noon. I think he really enjoys being around other kids and playing with his teachers and assistants. Because our air conditioner was on the fritz last week, Jacob and I went to my parents house last weekend to stay cool. Friday evening he was sick, mostly likely because of the heat. He was also sick early Monday morning, but because he vomited then had a fever, Brett and I feel he may have had a very mild seizure, but we don't know for sure. He has been feeling better since.  My preemie mom friend Lainie and I really have things rolling with the preemie support group. Our first meeting is scheduled for the 15th of this month here in Wichita. Lainie and I are also looking into forming a non-profit. We are still in the early stages, but I will definitely keep you Fighter Fans updated! August 13, 2006 Ten days....just ten days since my last update and SO much has been going on!  Jacob had a great first week at school, though his second week didn't go nearly as well. Last weekend Jacob developed a fever & stuffy nose- typical cold symptoms- so we kept him home from school Monday (8/7). On Tuesday (8/8) we kept him home again because he wasn't feeling 100%. By Tuesday Brett had the cold in full-force, and by the end of the week it was my turn. Gotta love a throat so scratchy it hurts to inhale....Ouch! Also last Monday, We received the lab results for Jacob's new seizure medicine. It wasn't quite to the "therapeutic" level, so we were instructed to increase the dose. By Tuesday afternoon we noticed Jacob had some red spots on his arms.....hmmmm. He went to school Wednesday (8/9) but by that evening those little red spots turned into full blown hives!! I called his pediatrician and she said to watch it overnight and call the next day if it was worse. So Thursday (8/10) when J woke up....it was definitely worse, he was covered in red splotches. I called the pediatrician again and scheduled an appointment for that afternoon. Upon examination, the doctor confirmed it was hives, but said we needed to get in touch with J's neurologist about the new medication- he suspected an allergic reaction. I didn't agree at first because J's been on the new medicine for over a month, but the pediatrician explained that the increase could have been the right amount to cause the reaction. In the meantime, he told me to stop all medicine that night and see if the rash got any better. We followed up Friday morning (8/11) and the rash did appear better, although it still looked horrible. I called the neurologist's office and the nurse told me (through the doctor on call) to stop the medicine completely, that the rash is not a good sign.....(I read in the drug information that in some cases...life threatening rashes can occur!! Oh my gosh!) Both the pediatrician and neurology nurse told me to watch for the hives in the mouth, eyes, or genitals, because that could be a sign of something serious. Thank GOD he did not have any in those areas.  Yesterday (8/12) much if the redness had gone away and Jacob was feeling better- not so irritable. Tomorrow we will be in touch with the neurologist again to see what the new plan of action is with an anti-seizure medication. We were in the process of weaning J from the old medicine when this allergic reaction occurred, so he still has some medication on board. These recent changes bring the possibility of break-through seizures, but we are prepared if one should occur. Brett and I haven't decided if we will send Jacob back to school Monday, or wait until Friday, the 18th, when the normal school year begins. That is when he will start going full days, riding the bus. We'll have to see how he does today.  In other news...Lainie and I are getting ready for our first preemie parent support group, scheduled for this Tuesday, the 15th. We are both very excited! We have distributed fliers around town (in the local NICU's and other locations) and hope to have a great turn out. I will definitely let you know how the first meeting goes! If you are in the Wichita area, and would be interested in attending the meetings, please contact me at onestrongmother@yahoo.com for more information. August 25, 2006 Happy Friday! Jacob's case of super-hives cleared up within a few days of my last update. We are thankful it began to clear once we stopped the seizure medication. Don't worry though, he is still taking the old medicine, so he's covered. Today we are starting a new medicine, which we hope will work without any major side effects or reactions. If it works out, we will start weaning him off the other med in six weeks.  This Sunday, the 27th, we will head to Kansas City (a three hour drive) for a two-night stay. Jacob will have an EEG and pre-anesthesia testing on Monday morning, then an MRI (under anesthesia) on Tuesday. After his testing Tuesday, we will meet with Dr. T, his pediatric neurologist to hopefully get the results. I'm not sure he will have the results that fast, but I assume that's why we are meeting with him.  Jacob has been going to school full days for nearly a week now, and so far (knock-on-wood) he is doing great. The bus comes to pick him up at 9:00am and brings him home at 4:30pm-although I just remembered that his pick-up time will be earlier starting next week. What a long day! Long day, yes, but a blessing at the same time. Jacob's long days at school will give him the best interaction and therapy he can get, allow me to work during the day, allow Brett to sleep (he works at night), so we can spend time as a family in the evening- something we haven't done in a long time. Brett and I pray Jacob will stay well this year and not miss too many days because constancy is important and of course his health is too.  Oh man, Jacob did the most amazing thing a few days ago! I was lying next to him and he started humming...and kept going and going and before I knew it, he had hummed a whole song! I couldn't believe it! I was humming along in my head and it was just to coolest thing ever! He has hummed along with toys before, but this time we weren't singing or playing with any toys, just laying on the bed and he started up on his own. SO cool! I hope humming turns into talking soon!  In Mommy news....My friend and fellow preemie mom, Lainie and I had our first Preemie Parent Support Group meeting on August 15th. We had one mother, who has a preemie in the NICU right now, and her aunt. It went well and we hope she continues to join us. We didn't get the word out soon enough for many to attend, so we hope our next meeting will bring more parents. In fact, March of Dimes helped us out by sending postcards to all the preemie families in the area, so hopefully our group will continue to grow. I am still looking into starting a non-profit, but because of my busy schedule, haven't made progress, but there's plenty of time since we are just starting out. Feel free to email me (onestrongmother@yahoo.com) if you have any thoughts, questions or concerns about Jacob, I love hearing from Fighter Fans!