Sunday, October 31, 2010
Saturday, October 30, 2010
Follow Up at UCLA for Kelly
On Thursday, I took Jenelle with me for my follow up at UCLA with Dr. Territo. Everything is good with me; my counts are strong and I'm still cancer free. Dr. Territo wants me to finish the course of ATRA (Vitamin A chemo) that I started in September, but had to suspend when I was having the headaches. I have a planned dental cleaning next Friday, so she wants me to start chemo the following Monday and take the ATRA for the next 10 days.
Prior to my appointment at UCLA, Jenelle and I stopped by my office to drop off donuts for our (new) secretary's birthday. My department has a new secretary, and her first day at the firm was the day Jenelle had a 9 minute seizure. Just as we were leaving to take her to lunch on her first day, I got the call and had to rush out. Since she had already heard so much about Jenelle, it was only fitting to have them meet, so she could see how special Jenelle is.
It was a wonderful visit for Jenelle. I realized the last time she made a visit at the firm was two years ago. At that time, I tried to walk her around the office halls, but she was easily tired. Last Thursday, Jenelle was walking everywhere, and very cute when she peeked her head over cubicle bays to say hello. We had a wonderful day together in our trip to UCLA, and it was helpful to have her for the car pool lane as well.
That is all for now. With the holidays approaching, my next follow up will be in 6 weeks. That is all for now - I'll keep you posted!
Prior to my appointment at UCLA, Jenelle and I stopped by my office to drop off donuts for our (new) secretary's birthday. My department has a new secretary, and her first day at the firm was the day Jenelle had a 9 minute seizure. Just as we were leaving to take her to lunch on her first day, I got the call and had to rush out. Since she had already heard so much about Jenelle, it was only fitting to have them meet, so she could see how special Jenelle is.
It was a wonderful visit for Jenelle. I realized the last time she made a visit at the firm was two years ago. At that time, I tried to walk her around the office halls, but she was easily tired. Last Thursday, Jenelle was walking everywhere, and very cute when she peeked her head over cubicle bays to say hello. We had a wonderful day together in our trip to UCLA, and it was helpful to have her for the car pool lane as well.
That is all for now. With the holidays approaching, my next follow up will be in 6 weeks. That is all for now - I'll keep you posted!
Friday, October 22, 2010
Our New 8 Year Old!
Jenelle and her big brother Jack!
Is this really for me?
I'd rather eat the table instead!
Yummy Pizzookie!
Happy Birthday Jenelle!
Happy 8th Birthday Jenelle!
Eight years ago today, we were blessed with the birth of our beautiful Jenelle. While her life has been challenging, we are constantly reminded that every achievement, no matter how small, deserves celebration. Thank you sweet Jenelle for making us better parents, and for showing us the important things in life.
My how you've grown! We love you!
My how you've grown! We love you!
Tuesday, October 12, 2010
Big seizure for Jenelle on 10/10/10
Sunday night, Jenelle was acting very strange. She had a horrible bout of insomnia. She was anxious, frantic and very distracted. She didn't fall asleep until well after midnight, after I held her tightly to get her to relax. If she had been a cat, I could have sworn we were going to have an earthquake.
Well, it wasn't an earthquake, but a bad day none the less for our Jenelle. About a half an hour after speaking to Jenelle's teacher to notify her about Jenelle's bout of insomnia, her teacher called back to tell me that Jenelle was having a grand mal, that it had been over 5 minutes and that she had already called 911.
I was at work, so I notified my boss, and left immediately. In the car, her teacher called back to tell me that they were on the way to the hospital and to meet them there. She said the grand mal went 9 minutes. I asked if they had given Jenelle Diastat, her emergency seizure medication, and her teacher said no. I got to the ER just as the ambulance pulled in. When I got back to the exam room, Jenelle was lethargic and curled up in a ball, and seemed tired, as to be expected.
The County program that runs Jenelle's school has a registered nurse on staff that is there to help administer Diastat when needed. As you may have heard in the news, the Board of Registered Nurses in California have succeeded in obtaining a court ruling to back their recommendation that only a registered nurse, or medical doctor can administer Diastat. The BRN also feels that the RNs on campus are not qualified to instruct lay professionals, like school nurses (that are not RNs), health room aides and teachers, on how to administer Diastat (which is a dose of valium given rectally. The BRN recommendation also extends to EMTs and paramedics, prohibiting them from administering Diastat when needed. Sadly, the issue is a time bomb ticking. Individuals who have given Diastat in the past to stop seizures from going too long and inflicting brain damage are now prohibited from giving it. The RN who is normally scheduled to be at Jenelle's school yesterday was out sick, so Jenelle did not get her Diastat.
The County Nurse who was at another location during Jenelle's seizure arrived at the ER to pick up Jenelle's teacher, who rode with Jenelle in the ambulance. Both are wonderful care givers to Jenelle, and we completely understand why their hands were tied in this situation. I will, however, sending a strongly worded letter to the Board of Registered Nurses.
At the ER, they ran blood work and urine tests to make sure Jenelle wasn't ill. She started to have more seizures in the ER, so they started an IV and gave her a loading dose of Dilantin. During the Dilantin push, Jenelle started vomiting. It was a strange reaction as she has never vomited with Dilantin before. With the Dilantin, Jenelle fell asleep and the ER sent us home after her test results were normal. We got home around 4:30 and I gave Jenelle a shower to rinse her off. She went straight to bed and slept until 8:30.
Around 10:00 p.m., Jenelle started vomiting again. Knowing that she hadn't had her medicine or much to eat all day, I sat up with her until after midnight trying to get fluids into her g-tube. Jenelle kept dry heaving, but eventually fell asleep, so we avoided a return trip to the ER. Today, Jenelle has been holding down fluids, meds and food. We were very fortunate that Jenelle's seizure stopped on its own after 9 minutes. She started acting more like herself this evening, and even said "mum mum" and gave me a hug.
We aren't sure if Jenelle had a little stomach bug, or if the vomiting was from the Dilantin. Dr. Shield's office recommended increasing the Vimpat to see if that helped. We are scheduled to see him again in November, but he may try to get us in sooner. Until yesterday, Jenelle's seizures had been under control, and we really didn't have any indication that this would happen. We are grateful that she is acting like herself and hopefully done with seizures for a while.
Thanks for the continued thoughts and prayers. I'll keep you posted.
Well, it wasn't an earthquake, but a bad day none the less for our Jenelle. About a half an hour after speaking to Jenelle's teacher to notify her about Jenelle's bout of insomnia, her teacher called back to tell me that Jenelle was having a grand mal, that it had been over 5 minutes and that she had already called 911.
I was at work, so I notified my boss, and left immediately. In the car, her teacher called back to tell me that they were on the way to the hospital and to meet them there. She said the grand mal went 9 minutes. I asked if they had given Jenelle Diastat, her emergency seizure medication, and her teacher said no. I got to the ER just as the ambulance pulled in. When I got back to the exam room, Jenelle was lethargic and curled up in a ball, and seemed tired, as to be expected.
The County program that runs Jenelle's school has a registered nurse on staff that is there to help administer Diastat when needed. As you may have heard in the news, the Board of Registered Nurses in California have succeeded in obtaining a court ruling to back their recommendation that only a registered nurse, or medical doctor can administer Diastat. The BRN also feels that the RNs on campus are not qualified to instruct lay professionals, like school nurses (that are not RNs), health room aides and teachers, on how to administer Diastat (which is a dose of valium given rectally. The BRN recommendation also extends to EMTs and paramedics, prohibiting them from administering Diastat when needed. Sadly, the issue is a time bomb ticking. Individuals who have given Diastat in the past to stop seizures from going too long and inflicting brain damage are now prohibited from giving it. The RN who is normally scheduled to be at Jenelle's school yesterday was out sick, so Jenelle did not get her Diastat.
The County Nurse who was at another location during Jenelle's seizure arrived at the ER to pick up Jenelle's teacher, who rode with Jenelle in the ambulance. Both are wonderful care givers to Jenelle, and we completely understand why their hands were tied in this situation. I will, however, sending a strongly worded letter to the Board of Registered Nurses.
At the ER, they ran blood work and urine tests to make sure Jenelle wasn't ill. She started to have more seizures in the ER, so they started an IV and gave her a loading dose of Dilantin. During the Dilantin push, Jenelle started vomiting. It was a strange reaction as she has never vomited with Dilantin before. With the Dilantin, Jenelle fell asleep and the ER sent us home after her test results were normal. We got home around 4:30 and I gave Jenelle a shower to rinse her off. She went straight to bed and slept until 8:30.
Around 10:00 p.m., Jenelle started vomiting again. Knowing that she hadn't had her medicine or much to eat all day, I sat up with her until after midnight trying to get fluids into her g-tube. Jenelle kept dry heaving, but eventually fell asleep, so we avoided a return trip to the ER. Today, Jenelle has been holding down fluids, meds and food. We were very fortunate that Jenelle's seizure stopped on its own after 9 minutes. She started acting more like herself this evening, and even said "mum mum" and gave me a hug.
We aren't sure if Jenelle had a little stomach bug, or if the vomiting was from the Dilantin. Dr. Shield's office recommended increasing the Vimpat to see if that helped. We are scheduled to see him again in November, but he may try to get us in sooner. Until yesterday, Jenelle's seizures had been under control, and we really didn't have any indication that this would happen. We are grateful that she is acting like herself and hopefully done with seizures for a while.
Thanks for the continued thoughts and prayers. I'll keep you posted.
Monday, September 27, 2010
Crappy day for Mom ends with a spectacular milestone for Jenelle!
I've been sick today with what my oncologist thinks is a nasty flu virus going around. Headache, vomiting and stomach problems kept me from work today. I still have a headaches, but I'm hungry, so that is good.
While getting Jenelle ready for bed this evening, I found an old switch toy that she hadn't played with in a long time. The toy (that is operated by a big red button switch so Jenelle can easily activate it) is a light table with see thru color blocks that are used with the light. Wondering if the battery still worked, I plugged it in to find it still working.
I started to show Jenelle the various colors on the light table and tried to get her to activate the switch. She wasn't very interested. As a last effort to keep her interested in the toy, I asked her to "Show me the green one. Grab the green one." She sat still. Thought for a minute, then used her right hand to reach for and grab the green block. It was so exciting! Her grasp wasn't strong enough to give me the block, but she definitely made an effort and choose the right color (out of four on the screen!)
I called for Jack to come see what Jenelle could do. He tried to help her, but I think having an audience gave her a little stage fright. She did make an attempt when Jack asked for the yellow one, but started to be interested in other toys.
So exciting to see Jenelle doing new things. I just know that she understands what we say, just how to make that communication connection. That is all we need to figure out!
Thanks for continued thoughts and prayers. I'll keep you posted!
While getting Jenelle ready for bed this evening, I found an old switch toy that she hadn't played with in a long time. The toy (that is operated by a big red button switch so Jenelle can easily activate it) is a light table with see thru color blocks that are used with the light. Wondering if the battery still worked, I plugged it in to find it still working.
I started to show Jenelle the various colors on the light table and tried to get her to activate the switch. She wasn't very interested. As a last effort to keep her interested in the toy, I asked her to "Show me the green one. Grab the green one." She sat still. Thought for a minute, then used her right hand to reach for and grab the green block. It was so exciting! Her grasp wasn't strong enough to give me the block, but she definitely made an effort and choose the right color (out of four on the screen!)
I called for Jack to come see what Jenelle could do. He tried to help her, but I think having an audience gave her a little stage fright. She did make an attempt when Jack asked for the yellow one, but started to be interested in other toys.
So exciting to see Jenelle doing new things. I just know that she understands what we say, just how to make that communication connection. That is all we need to figure out!
Thanks for continued thoughts and prayers. I'll keep you posted!
Monday, September 20, 2010
Back to School means Runny Noses!
Since starting Vimpat last week, Jenelle has been doing OK. We started seeing some increase in seizures on Thursday and started to wonder if it was the change in medication. However, on Friday morning, Jenelle woke with a clear runny nose, so that could be the reason for the increase in seizures as well.
On Saturday, Jenelle was very cranky and her runny nose was pretty bad. Fearing she might have an ear infection, I took her to urgent care where we had the quickest visit in history! The doctor checked her ears and they were fine. Because she has not had a fever with this runny nose, we're going to chalk the runny nose and increase in seizures up to a viral cold.
Unfortunately, she has now passed it onto Jack and me. I was supposed to re-start ATRA today (my vitamin A chemotherapy) but decided to wait until the I'm feeling a bit better. Ah, the joys of back to school.
Speaking of school, Jenelle's IEP last Thursday went exceptionally well. Our school district finally signed off on her IEP and agreed that the best placement for Jenelle this year is to remain in her current program with the County. Jenelle has met 15 of 25 goals, and her physical therapy is going to be "decreased" because there is not much more they can offer her at this time. I know that sounds strange, but when Jenelle arrived at age 3, she couldn't sit up, she couldn't stand or walk. We often wondered if it would even be a good idea to try to teach her these things, but as she improved and grew, she got brave and eventually overcame the odds. Her physical therapist will continue to help Jenelle with stairs, but for the most part, she has mastered sitting, standing and walking. She's our miracle girl!
That is all for now. I'll keep you posted.
On Saturday, Jenelle was very cranky and her runny nose was pretty bad. Fearing she might have an ear infection, I took her to urgent care where we had the quickest visit in history! The doctor checked her ears and they were fine. Because she has not had a fever with this runny nose, we're going to chalk the runny nose and increase in seizures up to a viral cold.
Unfortunately, she has now passed it onto Jack and me. I was supposed to re-start ATRA today (my vitamin A chemotherapy) but decided to wait until the I'm feeling a bit better. Ah, the joys of back to school.
Speaking of school, Jenelle's IEP last Thursday went exceptionally well. Our school district finally signed off on her IEP and agreed that the best placement for Jenelle this year is to remain in her current program with the County. Jenelle has met 15 of 25 goals, and her physical therapy is going to be "decreased" because there is not much more they can offer her at this time. I know that sounds strange, but when Jenelle arrived at age 3, she couldn't sit up, she couldn't stand or walk. We often wondered if it would even be a good idea to try to teach her these things, but as she improved and grew, she got brave and eventually overcame the odds. Her physical therapist will continue to help Jenelle with stairs, but for the most part, she has mastered sitting, standing and walking. She's our miracle girl!
That is all for now. I'll keep you posted.
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