Wednesday, November 1, 2006

November 2006

November 7, 2006 Just over two weeks until Thanksgiving...hard to believe, but boy do we have lots to be thankful for!

Jacob has been doing really well in his new preschool classroom. He is with the "big kids" who are the same age, but slightly bigger in size. Another great thing about being in this class is that Jacob is back with his old Pals, a boy and a girl (sorry, can't mention names) who are both visually impaired. I think it's great for him to be around kids his own age who have the same disability. He did have visually impaired friends in his old room, but they were not as close in age. I'm excited to see how he progresses in his new environment.

Jacob's progress with walking is at a stand-still (ha-ha, get it? Stand-still?). He can do it, that's for sure, but he chooses not to. There was a time a few months ago when he'd take 5 or even 10 steps on his own. Now he only walks if you hold one or both of his hands. I guess it's a natural thing. He needs to be interested and motivated. Perhaps he's concentrating on other things like........humming! He does it all the time. Just the other night Aunt Pam (my sister) was playing with him and hummed the first verse of Twinkle Twinkle. When she stopped, he picked it up right where she left off. I was so excited and proud that I was tearing up. We know Jacob is smart. He understands many things like words, voices, songs, etc, he just isn't spitting them back out yet. I think I may pass out the day he says his first word.

We are still waiting to hear from Jacob's Case Manager at Rainbows to see if he was approved for school funding. If approved, Jacob would receive educational toys, Braille books, special dinnerware and utensils, diapers, wipes, and his fee's to attend full day classes. What a blessing it would be! Any one of those items would be wonderful for Jacob and helpful to dad and I. We're keeping our fingers crossed and our prayers-a-flowing!

November is National Prematurity Month. Please check out for information on ways you can help!

November 15, 2006 We're letting him grow.....his hair that is. Brett and I decided to let Jacob's hair grow out and see what happens. It's been all over the place lately, but we want to see what it will do when it's even longer. Will it be thick and wavy? Perhaps thin and straight? Who knows! 

For the first time...EVER....Brett, Jacob and I are going to get a family portrait! Wow! Our digital camera has been glued to our hands since Jacob's birth so we have never considered getting professional pictures taken. We found that the Wal-Mart portrait studio has very reasonable prices so we plan to schedule a shoot in the next week or two- just in time for the holidays!

Jacob has been taking steps on his own this week. He's done it before (he started months ago) but until this week has been stubborn. If we can just get him to take a few steps on his own each day, he'll be walking all the no time at all. Once he reaches that milestone, we'll begin work on the next- walking with a cane.

Last week Jacob and I attended a VI (Visually Impaired) Group at Rainbows United. It was a wonderful experience. There were several parents there including two with older children who are blind. One who is 10 and the other, 14. I explained Jacob's current developmental stage, like how he still eats mashed foods, doesn't talk, isn't walking on his own, biting his hands, etc. and how Brett and I are growing discouraged over his delays. The other mom's eased our worries by telling us that their boys did the same thing when they were Jacob's age. Sometimes Brett and I wonder if Jacob will ever eat regular food- that is with his hands or a utensil and large pieces. We also wonder when his humming will turn into words. "All in time." the mother's explained. It sounds like he's on the right track. We've always had faith in Jacob, but hearing from other parents who have been there helps so much!

I remember visiting a friend over the summer who's son was just under a year old at the time. While we sat in her dining room talking, she put her son in his high chair, cut up a piece of fruit and set it in front of him. The little guy grabbed each bite with his fingers and munched away. "He's not even a year old," I thought to myself. "Jacob is three and we still have to mash his food and spoon feed him. Amazing." Growing up in the world is a whole different ball game when you can't see it.

Sunday, October 1, 2006

October 2006

October 10, 2006 Ok, I'm going to sound like a broken record, it's been so busy around here! :)

Let's see, Jacob has been doing very well. *knocks on wood* He's been going to school everyday *knocks on wood again* and other than a runny nose, has been healthy. Hmmm, I wonder if I've knocked on enough wood....Ok, back to Jacob. He went on a field trip yesterday to the local pumpkin patch. Unfortunately I wasn't able to go with him, but I was told he had a lot of fun. As you saw on the homepage, Jacob is quite the artist. He comes home with something new almost everyday. Our fridge is covered! 

Jacob has been working very hard on walking independently. Yesterday he took several steps on his own using his arms to check out his surroundings. Sometimes I have to hold back the cheers because it startles him and he falls down. What can I say, I get excited when he does cool stuff like that! When we assist him, we hold just one of his hands so he learns to balance. 

Jacob is doing really well with verbal cues and commands. He definitely knows what "no!" means. When mommy has her laptop on the coffee table and he stands up and puts his hands on it, he hears "no" and quickly pulls his hand away. When he gets upset and bites his hand in frustration, he'll hear "no biting" or "hands down please." He doesn't always stop, but he's getting better. When he's crawling around the house and we see that he's getting close to a wall or table, we say to him: "there's a wall Jacob" or "table" and he will slow down or turn and go another direction. We try to give him lots of encouragement with "thank you" "please" "good job" and he seems to respond to that. Now if we could just get him to talk back! 

In Family News....after over four months, our stolen car was located and returned to us in good condition. In fact, it was being used in a major car theft ring in the Wichita area. Our little car, a 98' Chevy Cavalier, was towing other stolen vehicles into a auto salvage lot. The thief's were using fake bills of sale to get cash for the stolen cars. Right now the car is awaiting a new license plate, a professional cleaning and of course a good tune-up/check to be sure there's no major damage under the hood. The thief's put a great deal of miles on it too. We are so grateful to God that we have our car back. It was very hard to make one vehicle work (hence the reason we bought a second car in the first place). And another great blessing: Brett's parents, who gave us a loan to purchase the car, told us we would not have to continue our monthly payments to them. Praise God for their generosity.

In Mommy News...I am plugging away at school. It's almost the half-way point in the semester and I'm doing good so far. I attend General Psychology on Wednesday evenings and Intermediate Algebra on Friday afternoons. I have been working plenty of hours in the NICU (about 15 a week) and just yesterday I started working at Rainbows United as a Respite Care Provider. I will work center-based at Jacobs school, but may do in-home care as well. How will I handle being Jacob's mommy (and the doggies too), Brett's wife, work two jobs and go to school? Very carefully! 

In related news... The preemie group I started with fellow preemie mom Lainie, Wichita Preemie's, is off to a slow start. We aren't giving up though! We have a great new flyer and will soon launch a website. I will update the journal as soon as the website launches. For more information, please email me at

October 22, 2006 It seems when the cool weather came in, it brought with it sinus infections and other cold-like symptoms. Just two weeks ago Brett, Jacob and I were sick and now we're feeling "under the weather" yet again. Jacob has a never ending runny nose and Brett and I both have sore throats and sinus pressure. Lots of water, rest and some good medicine seem to be doing the trick.

I'm sorry to say I don't have any new pictures to share- my sister, "Aunt Pam" borrowed my camera for her trip to Iowa last week. I plan to get camera crazy just as soon as we're all feeling better. 

Jacob is graduating! Starting tomorrow, Jacob will be in a preschool class instead of an infant/toddler class (as he has been for the last two years). We wanted to have him in a preschool class at the beginning of the school year, but there wasn't an opening. Needless to say a spot has opened up and we are so excited for him! With his new class comes a new bus pick up time- 8:45am, a whole hour and 40 minutes later than before...a great thing for mommy who is not a morning person. :)

In other news...the preemie support group web site is up and running! Check out! The group is going to be mentioned in the local newspaper, The Wichita Eagle, and a link to the site will be put on the web site of Wesley Medical Center. Lainie and I hope this will help our group grow!

Friday, September 1, 2006

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 ( 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.

Tuesday, August 1, 2006

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 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 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 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 ( if you have any thoughts, questions or concerns about Jacob, I love hearing from Fighter Fans!

Thursday, June 1, 2006

June 2006

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!

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!

Saturday, April 1, 2006

April 2006

April 9, 2006 Oh my, I went a while without updating! It's been good in Fighter Land, a bit busy in the last couple weeks, but all in a good way! Jacob has been healthy, thank God! He will start home therapy in a few weeks and then return to center-based (school) in the fall! We are praying the break, and the nice weather, with help his immune system.

Well, I'm at it again....I am doing another redesign of the website! It's going to have several new pages! I've been working on it a lot and hope to have it up in the next several days! It's just so much fun to do!

The speech for March of Dimes went very well. Thankfully Brett and my friend Kim came along, so I wasn't so nervous. Brett and Jacob came up with me, I told his story, and we returned to our seats. It was a very relaxed atmosphere! I had fun! It's always a pleasure telling people about my Fighter!

Alrighty, I'm off! Time to go to the movies!! Jacob's awesome Aunt Pam is babysitting for us! 

April 25, 2006 It's taken me a little while, but as you can see, I have the newly designed site up and running. Take a look around! I hope you enjoy it. I am still working it, so bear with me!

In Jacob news... The Fighter has been feeling good (knock on wood) and has started doing some new things! He now know how to "bear crawl" or get on around on his hands and feet. He goes all over the house, its adorable. And because he can't see, he does run into things, but he just turns and keeps on going, bump on the head and all! He's amazing!

In Mom news... On April 29th, I will be leaving for sunny southern California (where I grew up) for a week-long vacation....without Jacob or Brett! I will be going with my best bud Katie. It will be my first time away from Jacob for more than 24 hours...I'm scared! don't get me wrong, I am very excited for a break, for some "me time," but I will miss my boys very much! 

In Dad news... While I am away in California, Brett will be on vacation too, at home with Jacob to spend some real quality "guy time." He is really looking forward to the one-on-one time with Jacob, as well as some time away from work! 

More updates to come!

April 26, 2006 I hope you like the new look of the site. I really enjoy designing it for my Fighter! I'm still touching it up here and there, but Jacob will be starting home therapy in May. Since we have taken him out of school until the fall, he had to return to home therapy in the meantime. He needs to have all the intervention possible, even while he's out of school. We look forward to it thought, because Jacob enjoys his time with his therapists. 

I am excited to share with you that I have been hired to write another article for Preemie Magazine. I am working on the piece now and will keep you informed of its publication! :)

Wednesday, March 1, 2006

March 2006

March 2, 2006 Jacob has been doing really good this week! He's been to school every day so far and even stopped by the NICU earlier this week to visit his old friends. Brett had to pick me up that day, so he brought Jacob up to see everyone. It was nice. 

Unfortunately, I will have to take down the Guest Book again. Someone has decided to use Jacob's guest book as a means to advertise and it's happening a lot. I will take down the option to submit automatically, submit the info myself. That way I can filter out the "spam." It's horrible that people waste their time doing that.

March 9, 2006 Some of you may already know, but Jacob is in the hospital again. 

It all started with a fever Sunday evening, then vomiting on Monday. We thought we'd try taking care of him without going to see anyone, but obviously it didn't work out that way. His fever persisted through early Wednesday morning when we took him to the ER. He didn't want to eat or drink either, so he was dehydrated. In the ER they gave him IV fluids, put him on oxygen, took blood for testing and took a chest x-ray. Although those tests came back normal, he was requiring oxygen and the fever still wouldn't break. An examination by an ER medical student, found that he has a double ear infection. After a few hours of waiting, and the recommendation of his pediatrician, he was admitted to the pediatric unit. 

Last night things got a little worse as he needed more frequent breathing treatments and increased oxygen. Doctors may repeat a chest x-ray later today because they said that sometimes when little ones are dehydrated, an x-ray can be deceiving. Now that Jacob is hydrated, he has some raspy lung sounds, is coughing a lot more, and breathing faster, all possible indications of pneumonia or bronchitis. He will be in the hospital at least another night, if not longer. 

Brett and I are taking turns at the hospital. When one of us needs rest, the other stays with Jacob. It's hard. Right now I am at home, and soon after updating the site, will be going to bed for a few hours. I decided that since I work right there in the hospital, I will work for a few hours tonight. Brett will be with Jacob. 

Because this is his fourth hospital stay (due to respiratory issues) since September, Jacob's pediatrician has sent in a pulmonary (lung) specialist to see him. We will likely pull Jacob out of school until the fall as well. He did not get sick nearly this often before he started, so we know the exposure to other children and germs is causing his frequent illnesses.

Please keep Jacob in your prayers and I will update you as soon as I can.

March 10, 2006 First I would like to thank everyone for your kind words and prayers. They keep us going during times like this. God Bless you!

Jacob had a hard night. He needed more oxygen and was very irritable. After a while, he calmed down and finally went to sleep for several hours. When he woke up, his oxygen need decreased and he ate and had some juice...all great signs. He will be in the hospital at least one more night, or until he is off oxygen and eating and drinking well for several hours. We hope he continues to improve this afternoon/evening and overnight, so he can come home tmw. All tests are still negative, so doctors think the fever was from the double ear infection and his breathing issues may be pneumonia. Because his chest sounded better this morning, they decided against another x-ray. They may do one if he gets worse though. 

I will update again when I can. Again, thanks for your support!

March 11, 2006 Jacob is doing much better today! We were hoping he would come home today, but it looks like it will be tomorrow (as long as he continues to do well). My sister Meagan came to the hospital last night and this morning to help us out; what a sweetheart. 

Brett and I continue to be by Jacob's side in shifts. I take the nights and mornings, Brett does afternoon/evening. Each day I have used the time to come home for a little while, play with Skipper and update the site, then I head back to the hospital to work for a few hours before going back to Jacob's room. Brett went back to work last night, only staying for half his shift before coming back to the hospital. We are both staying strong for our Fighter! More updates to come...

March 13, 2006 Jacob didn't get to come home yesterday like I thought, nor will he get to come home today. He managed to go a couple hours without oxygen yesterday, but has since gone back on. He cannot leave the hospital until he can eat, sleep and play several hours without it. He is doing well otherwise; playing, standing, eating, drinking, etc. 

Brett has been with him since yesterday afternoon because now I am sick, very sick. What started as a sore throat and stuffy nose, is now the full blown flu, or something similar. Achy, coughing, stuffy, all the good stuff. To help us out, My Mom and sister Meagan have offered to spend tonight with J so Brett can work (and rest) since I have to stay at home. I don't know what we would do without family and friends! God Bless you!

I would like to give a special thanks to the Kennard family, for the lovely basket of treats. And to my dear friend Natasha for offering to make us a home-cooked meal. I can't put into words how much you guys have helped us. This is very hard for us, but we stay strong with the support of you and Jacob's endless fighting power! 

I will update again soon, for now I must get back to bed and rest. God Bless!

March 14, 2006 Jacob made it home from the hospital late last night, thank God! We are so happy he's back home. He was sent home with oxygen to use while he sleeps and in a few days we will take him to his pediatrician for a follow up. Then in a few weeks, we will follow up with the Pulmonary Specialist. 

We can't wait for life to get back to normal. Thanks again for all your prayers! They helped so much!

March 19, 2006 The last few days have been good! Jacob is feeling much better and were settling back into our daily routine. Jacob and I aren't on the best sleep schedule, but we are at least getting our rest. 

Jacob went to see his pediatrician on Thursday. She said Jacob looked good and a monitor showed his oxygen level was great! She suggested we give him oxygen (while he sleeps) for a few more days. She also mentioned the possibility of Jacob needing tubes in his ears because of his frequent ear infections. From what I hear, it is a common surgery in children. And of course Brett and I want to do whatever is needed to keep J's ears healthy. He already has vision loss, we do not want him to lose his ability to hear. 

In Mommy news... I am really enjoying my job at the NICU. Although the title "Cleaning Tech" doesn't sound glamorous, it is actually a nice job. Yes, I do clean beds and stock supplies, but I also talk to parents, assist nurses and observe various things in the unit. The experience I am getting is going to do wonders for my nursing career. And the more I am there, the more I want to be a Neonatal nurse. Before starting this job, I told myself I wouldn't decided which area of nursing I would work in until after nursing school (since I would work many clinical rotations in various departments) but at this point, I am definitely leaning! I won't be done with school for three years, so I have plenty of time to decide, but if work in the NICU until then, I just may end up a NICU nurse!

March 27, 2006 Happy Monday to ya! Jacob has been doing really well! He's off oxygen and antibiotics and other than sleeping odd hours, he's great! We are working with Rainbows United to withdrawal him from school and return to home-based therapy. We will try school again in the fall. We hope a few months at home will allow his immune system to get stronger. 

Now that the weather is starting to get warmer, Brett and I will be taking J outside more. We'd like to take him to the park, the zoo, or even our own backyard. He loves to swing, so he'll be doing plenty of that! We would also like to get him used to walking outside on different things (concrete, grass, etc). He still needs to hold our hands when he walks, but the more we work with him, the faster he'll walk independently. We can't wait!

Be sure to visit the site in the coming days as I will be adding several new pages and will complete those that are "under construction."

March 30, 2006 Monday evening I received a call from Teresa B., the Neonatal Nurse Liaison for Wesley Medical Center (I met her the day I interviewed for my job). Teresa also serves as the Chairman of Program Services for the Wichita Chapter of March of Dimes. She asked me if I would be willing to speak about my experience as a preemie mom at a kick-off party for the local Walk America event. Of course I said yes! I'm honored!

I will be speaking to a group of volunteers who are employed by a local grocer. There will be about 60 people. I am very nervous as I have not spoken in front of that many people before. Since I have told Jacob's story before, I won't be preparing anything...I'm winging it!

The event is this morning at 8:00am! I will be bringing Jacob along for everyone to meet. Brett and my friend Kim will also be coming for support and to take pictures! Wish me luck!

Friday, February 10, 2006

In The News

On February 8, 2006, Jacob and his Mom were featured in the local newspaper, The Wichita Eagle. Eagle reporter Karen Shideler wrote the article about Trish's publishing debut (see Preemie Magazine page) as well as Jacob's amazing story.

Sunday, January 1, 2006

January 2006

January 4, 2006 Happy New Year! Welcome to 2006! I hope it is a very happy and healthy year for you and yours!

Jacob has started this new year feeling great! Yesterday was his first day back to school since being in the hospital and he had a great day! He was in a good mood and was very talkative! 

Our Fighter continues to crawl (hands/knees and hands/feet) all over the house and walks fast and far holding our hands. He pulls to stand on everything, furniture, boxes, even the rocking chair! We are so proud of him and look forward to when he's walking on his own. That's when we will really need to show him around!

Check out the new pictures on the Photos page!

January 9, 2006 The Fighter's mom has been published! That's right, my article about ROP (Retinopathy of Prematurity) has been published in the current issue of Preemie Magazine! I am honored for the opportunity. I am grateful to be able to spread the word and educate other preemie parents and professionals about the devastating disease that took Jacob's vision. Check out the article in the current issue, or visit in the coming weeks for the online version. 

January 18, 2006 After another illness and time away from school, Jacob is back to his old happy self. Brett and I were so discouraged with his frequent illness that we thought about pulling him out of school until the spring. In the end we decided against that and will just take things one day at a time. We would rather he be sick and miss days here and there rather than keeping him home all together. Attending Rainbows and receiving the love, care, and therapy that he does, has been too beneficial to him to pull him away from it. 

Jacob continues to amaze us at home (and at school). Just last week he took three steps unassisted. My heart dropped and I teared up as he stepped forward in the kitchen. He continues to try each day, although those three steps are the farthest he's gone so far. It won't be long before he's walking all over the place! And that's when we will be Jacob-proofing things around the house! :)

In Mommy News....After several months of hunting, I have a new job! Believe it or not, I will be working in the NICU were Jacob spent the first four months of his life. I applied for the position some time ago and forgot about it when I didn't get a response. Well, the nurse manager called, asked if I was still interested and the rest is history! I am very excited! I will be working as a cleaning/stocking tech and will also help the managers with parenting feedback/support. I will have orientation on Jan. 30th and begin working in the NICU after that! I am very thankful to have been given this opportunity! 

January 24, 2006 I have received many emails from people who have visited JTF! Some have even signed the Guest Book! It's so exciting to know that sharing Jacob's story has touched so many people. I love sharing his story, especially with other preemie parents. 

Jacob's been in a great mood lately and is pulling to stand at just about everything now. The couch, the table, even the walls! It's so neat to watch! He is starting to glide along things too! He continues to trying to take steps on his own. I know it won't be long before he's walking.

In Mommy news......After much thought, I have decided to take a semester off from school. It's been a very busy few months and I think the time off will help a lot. I plan to return to school for the summer session.