June 7, 2006 Wichita's Walk America 2006 went very well! As you have probably seen on the home page, I raised $700 thanks to my family and friends! It's the most I have raised for this event.
Jacob has been doing well so far this week. We have ourselves on another bad sleep schedule though, but its so hard to switch back to normal. See, Jacob will stay up really late, until....3am for example. Of course that means mommy stays up late too. And to get a full nights rest, we have to sleep until 11am!! Just the other day, without realizing it, we all (Brett included) slept until 4pm! Yes, that's correct...4PM!! I couldn't believe it when I woke up. Needless to say that put us into a horrible cycle. I'm working on it!
Having Jacob back in home therapy brings with it numerous appointments each month...nothing we can't handle! Jacob is doing well with therapy. This week he met with is VI therapist and she was very pleased to see the neat things Jacob is doing. We look forward to his continued progress over the summer!
June 8, 2006 Oh my goodness...I really spoke too soon. Jacob had another seizure yesterday, possibly two, but we aren't sure. He was upset again. Shaking again. Then he vomited. We called 911, this time though, we did not go to the hospital. We just wanted the shaking to stop. The meds didn't work...again. I called Jacob's neurologist and he wants to see him today, first thing. I hope he does some testing. I hope he does something because this is too much. I am still going to call Children's Mercy in Kansas City for a second opinion, because I am not pleased with the care he is receiving. Until then, I will take him to his doctor in town. This has to stop. This isn't good for his body, especially his brain. I want to know what's going on and stop it.
Please keep us in your prayers. Thank you! :)
June 14, 2006 Just three days after his last seizure episode, Jacob had another, and it was a pretty bad one. Sunday morning (June 11th) Brett was caring for Jacob while I caught up on sleep. Jacob wasn't acting like himself. He soon began to vomit and "shiver". Brett called me out of the bedroom to help him administer the rectal "stop-the-darn-thing" medicine. It didn't work. We gave him some oxygen, but that didn't seem to help either. He was seizing nearly 15 minutes when we called 911. Of course once help arrived, the shaking had stopped. We observed him for a few minutes, contemplating going to the hospital, when he started shaking once again...time to go! One of the EMT's carried Jacob outside where they had a stretcher waiting. They had me sit down on it, and handed Jacob to me. We were on our way again. Jacob did well during the ambulance ride. It wasn't until we were in a hospital room that he began vomiting again. Then, as with all of his seizures, he spiked a fever...over 103 degrees. Tests were done, many questions were asked...nothing was found. They were going to admit him because he was on oxygen, but they left it up to us. Of course we wanted to go home. We already had an EEG scheduled for him this week anyway, so we just planned on going to that. That appointment is this afternoon. I hope the EEG shows something, then again I don't. I just want to know why this keeps happening. Why the meds we give to stop the seizure don't work, why they are getting longer, why they are now during the day, and not at night....why? I also made a call to a pediatric neurologist in Kansas City...I haven't heard back. We will keep seeing the doctor in town until we can get in at KC.
"Lord, we know things could be so much worse, but please give us strength." -Trish
June 20, 2006 Jacob had his EEG last Wednesday but I have not heard about the results yet. On Friday I called Children's Mercy again. I explained Jacob's condition, the recent episodes, etc and a nice woman helped me set up an appointment for late this summer. She told me that doctors are sparse over the summer and that Jacob would have to see the Nurse Practitioner. That's ok by me! I was happy to get him in! She told me that if I wanted to get him in sooner, I could call Jacob's pediatrician and have her call their doctor on call, expressing her concern about Jacob's seizures. And that's just what happened! Jacob's appointment was moved up to next week, not with the practitioner, but with one of the physicians! I am so excited! I pray that he/she is able to find out what's going on and give us some guidance. Even if they tell us the same thing the other doctor has been telling us for the last two years, at least I will know from another, more reputable source. I'll keep you posted!
June 29, 2006 On Friday June 23rd, I took Jacob in to see the local neurologist to discuss his EEG results. As I suspected, the EEG was abnormal, showing seizure activity in one area of his brain. What area of the brain, or if the seizure activity spread at some point, I don't know. She wanted to change Jacob's medication, but before doing so, I wanted the opinion of the doctor at Children's Mercy Hospital. That ended up being a smart decision.
We headed up to KC yesterday morning and arrived right on time for Jacob's 1:00pm appointment. The doctor was amazing! Just amazing! We learned more (about seizures) during our visit with him then we have since Jacob was born. Brett and I decided immediately that we would bring Jacob to him from this point forward. Jacob will be starting on a new medication and will be slowly weaned off the current one. Also, the doctor would like to have more testing done, so we will be scheduling that soon (we could not schedule on the spot because the testing will require an overnight stay in the KC area, so we had to get home to check the calendar first).
We are so thankful for the new doctor and for being a little closer to figuring out what's going on. We hope, and the doctor is confident, that the new medication will be better for Jacob. If he has breakthrough seizures, we will use the "as needed" medication, which we have used in the past (only now we have the correct dose for his weight).
Other than being in the car and stroller all day, Jacob had a good day. He was in a pretty good mood during the appointment and ate some Mac-n-cheese at Applebee's before we headed back to Wichita. What a trooper! Today he gets to relax, then he has a therapy session tomorrow afternoon. In the next few weeks, we will be getting him enrolled in school. We are praying that he stays healthy this school year and we can avoid hospital stays and the need to pull him out again. That was hard. We are excited to see how he will blossom just as he did when he started last year. We can't wait to see what new things he will learn!