February 1, 2005 I am in the process of giving www.jacobthefighter.com a whole new look. I thought adding some color would be nice until the change is complete!
In Jacob news, He has had a great week! Although he has been without a contact lens or glasses (they are a bit large and fall to the tip of his nose), I have seen him react to the lights of a new toy (thank you grandma Horton!). Just when I thought there was no hope for vision, he showed me what he could do! I haven't reported the news to his eye doctors yet, but I will soon. They will be pleased!
Later this week J will see one of his therapists and we hope she sees the progress he has made with standing, crawling and walking. Brett and I have been working with him each day and it seems to be paying off.
The little guy was with me in the den yesterday (which is an addition to this home and sits on a nice cement foundation) when he was sitting on the floor and fell back, hitting his head. He cried for a moment, then was back to blowing raspberries and laughing! That's my miracle boy!
February 8, 2005 Jacob gave Brett and me quite a scare late Sunday night. We had been out all day at a super bowl party, which tired him out, so he went to bed soon after we got home. He woke up crying at 3:00am so I went, got him from his crib, and lay with him on the couch, trying to calm him back to sleep. Immediately I noticed he was shaking terribly, as if he was shivering. I sat up and tried to lay him down in front of me, but he wouldn't let me put him on his back. He kept shaking and arching his back. I woke up Brett and we agreed that it looked like he was having a seizure. Brett called 911 and the fire department and ambulance arrived within minutes. They asked us if we had taken his temperature, which we hadn't because he didn't feel warm. Brett grabbed the thermometer and we took his temperature. It was a very low-grade fever. The paramedics wanted to get him to the hospital, so they asked me to get J a blanket and get on some shoes. I carried J out to the ambulance while Brett got the house locked up and got ready to follow in the car. We didn't leave right away because the paramedics tried to get an IV started (which they weren't able to do because they couldn't get a good vein) and got J hooked up to monitors. Although it seemed to me that his heart was racing, his rate was normal. On the way to the hospital, he stopped shaking but felt very warm. At the hospital, he had a rectal (most accurate) temperature of 103. The nurse who cared for him was very nice. She gave him some Motrin and within a short time, his temperature started going down. A doctor came in to talk to us and diagnosed him as having a febrile seizure. A febrile seizure occurs when the body temperature raises very quickly, which then causes convulsions. The doctor told us to give him Motrin or Tylenol and to watch him close, that he did not need to stay over night. He told us to call his Pediatrician in the morning. Febrile seizures have not been shown to cause brain damage; they are just very scary to watch. (Yes, they are!).
We left the hospital and went to four stores near our house in search of meds for J. The first store was closed, the second didn't have anything, and the third was closed, so we ended up at a 24-hour Wal-Mart. We finally made it back home at 5:30am. After feeding, changing and giving him meds, I took J into bed with me, while Brett stayed in the living room to watch TV. We didn't wake until 1:00pm Monday afternoon.
Right now J is feeling much better. Brett and I have no idea where this fever came from, but it left just as quickly as it came and scared the hell out of us in the process. Needless to say, J will be sleeping with me for the next few nights!
February 11, 2005 - Morning Jacob has been feeling much better this week. He has not had a fever since the episode last weekend! To be on the safe side, I called his Neurologist and scheduled an appointment.
Surprisingly, they were able to get him in this afternoon. I want to be sure that the febrile seizure is not at all related to the seizures he had while in the NICU.
Yesterdays home therapy visit was a great one. Not only did J work with his VI therapist, whom he adores, but he also visited with a nutritionist. I gave her a brief history and told her what J's eating habits were like. I told her I gave him formula for his first and last feedings of each day, with whole milk and food in between. She told me that his formula only contains two calories more per ounce than whole milk, so we could stop formula and go to whole milk full time! Yay for Mom and Dad's pocketbook! Oh, I was so happy to hear that!
Next week, on February 17th one of my best friends, Denise, who I have known for many years, will be flying into Wichita from Minneapolis for a visit. This will be her first time meeting J! She is very excited!
February 11, 2005 - Evening J's Neurology appointment went well today, although I did not get the news I expected. Jacob saw Dr. S's PA who isn't convinced that J had a febrile seizure. Given the fact that he wasn't ill before or after the incident, it indicates other possible problems. She wants J to have an EEG, to see how things look. The office is booked for the next six weeks (because she will be taking maternity leave, and all her patients are trying to get in) but J has been put on the cancellation list as a priority. Hopefully he will be able to get in within a week or two.
In the meantime, the PA gave me a prescription for medication to be administered should J have another seizure. The medication takes 3 to 5 minutes to stop the seizure. Once he has the EEG, she will be able to determine whether he needs to be put back on daily seizure medication. Of course, we pray everything turns out fine and he doesn't need medication.
February 23, 2005 It has been a hectic but fun week. On Thursday the 17th, one of my greatest friends, Denise, flew in from Minnesota. Denise and I became friends over 10 years ago while living in California. After attending undergrad at Cornell University, she moved to Minnesota for law school. This was her third trip to Kansas, but her first time seeing Jacob. She had a great time, other than some flight delays for her trip back to MN (she ended up staying an extra night due to a cancelled flight, which meant more time with Jacob!).
On Monday morning, Brett and I took J and drove to Topeka Kansas. Once in town we stopped for lunch, then went over to the Capital Building. We met with Debbie, a representative with Rainbows united, who introduced us to a few people, including other parents. At 3:30pm, we entered a large room where the committee was seated. One at a time, individuals were called to the podium to speak. Parents as well as professionals spoke. When I was called, I approached the podium and introduced myself. I then began reading from the paper I wrote Sunday night. Brett stood next to me holding Jacob. While talking, I looked up to make eye contact with the committee and lost my place when I looked down again. I was quiet embarrassed. Brett whispered "take your time," which made me feel better. When I was done, Brett was called. I returned to my seat with J. Brett told me later that he wasn't nervous until he stood at the podium. He said his legs shook, although I couldn't tell. Others went after us, but we did not stay for the remainder of the meeting.
Brett and I feel honored to have taken part in something so important for the future of Tiny K services in Kansas. We feel that speaking about the wonderful things Rainbows has done for Jacob is the least we can do to show our gratitude. I would jump at the chance to do this again, whether before state officials or otherwise.
If you have any questions, or would like to read what Brett and I read aloud to the Budget Committee, please contact Trish.
February 23, 2005 This morning Jacob went to the Neurologist for an EEG. He was scheduled for a few weeks from now, but a cancellation allowed him to get in sooner. He was sedated for the test, which went well. Afterwards, I took him home for lunch, then returned two hours later for the follow-up and results. I am very happy to report that the EEG was normal, showing no seizure activity. Dr. S said to call if he has another episode, otherwise he doesn't need to see him again until the end of the year! Yay!!
In family news, this morning Brett and I will take J to Winfield, Kansas (about an hour away) to visit a 1-year-old Rat Terrier named Skipper. If all goes well, we will welcome Skipper to our home as our first family pet!
February 28, 2005 We have added a new member to our family! Skipper is a year and a half year old Rat Terrier we adopted through the Cowley County Humane Society. He is fully trained and loves to shake, give you high-fives and cuddle. He loves to sit on your lap and sleep in bed with you, sometimes under the covers! Brett and I know he is a perfect fit for us. He has been really good around Jacob, too, which is very important. Today when Brett went to get some take-out, Skipper went with him! He's a very loveable and friendly dog!
The coming week will be very slow for J with only one appointment on Friday (3/4/05), with his Pediatrician. We will definitely take advantage of the break, because out of the nine appointments J has in March, four of them will be during the week of March 6th. Three therapy visits and one with his Urologist. Busy, busy! It's all very worth it though!