I wanted to briefly share a news article and blog I found on Yahoo this morning, about a Dad who surprised his son's school bus each morning by waving good bye in a different costume each day. The article can be found here, and here is "Peg Leg Dave's" Blog.
This reminded me of my Dad, and how each day for my lunch at school, Dad would draw a cartoon on my lunch bag, or some special message. At first it was embarrassing, but then other kids at school were curious each day and wanted to see what message I had on my bag. Sometimes before Christmas Vacation, Dad would be so creative, he would write the music notes to "Hark the Herald Angels" and the words "Hark the Herald Angels Shout, ___ (insert number of days) till school is out!"
As kids get older, and as I am learning with Jack as he is now a tween, it is harder to find something to connect you. But doing little reminders like this, help keep kids grounded in family. Kids begin to realize that its OK to laugh at yourself, or your family, because laughter is healthy.
I found it very interesting that the Father in this story has a prosthetic leg. I think that those of us with special circumstances (i.e. be it a disabled child or disability of our own) often have to have a sense of humor when dealing with everyday life.
What a wonderful memory for this son, and what a wonderful relationship this family has with one another. Thank you to my Dad, for all the time and effort that went into decorating my sack lunches. I only wish I had saved them all.
Tuesday, June 07, 2011
Tuesday, May 17, 2011
Changes & Close Calls
I've been remiss in updating a while, but I have a darn good reason ... we moved! I've been telling everyone that I'm too old for moving, and that moving is for young college age kids. Then I realize I sound like my Mother! ;) For the sake of our privacy, and because Jenelle's website is internationally famous, I'll simply say that we are in our new home, we love it and the kids are adjusting very well.
That said, our lives have been pretty hectic of late. So much so that we had a small scare a few weeks ago that shocked us into being reminded how fragile Jenelle can be. While busy one afternoon, Jenelle snuck out of her play area, walked through our garage filled with boxes, across our front lawn, to the open front door of our next door neighbor's home, through their living room (avoiding many glass vases and figurines), through their open sliding glass door and into the deep end of their pool. And yes, Jenelle does not know how to swim.
Thankfully, God made sure there were some guardian angels watching Jenelle that day. Our neighbor's relative from Holland was lounging by the pool with his eyes closed. He had just asked the 14 year old if he wanted to swim, and the 14 year old declined because he had homework. As he laid in the sun, he heard the splash and thought to himself that the 14 year old had changed his mind. A few seconds later, he realized that he didn't hear anyone resurface after the splash. He opened his eyes, looked into the deep end, and realized a child he didn't know was sinking to the bottom. Jenelle had instinctively held out her arms, and he was able to grab her arm and pull her out of the pool without jumping in.
After coughing up water, Jenelle did not answer when he asked if she was OK. Because he didn't know her and didn't know that she couldn't talk, he called for the 14 year old, who ran down stairs, recognized Jenelle and scooped her up and took her to Brett. Brett was very calm as he took Jenelle into his arms. He simply looked at her shivering, cold body and said, "sweetie, you know you can't swim silly!" and took her inside to change her.
Not many people can truly say that they have saved a life, but the relative from Holland saved Jenelle that day. If he hadn't been by the pool, or if he had drifted to sleep, she would be dead. And my stomach lurches when I think of what could have happened. We are very lucky, and Jenelle will be taking swim lessons this summer!
That said, our lives have been pretty hectic of late. So much so that we had a small scare a few weeks ago that shocked us into being reminded how fragile Jenelle can be. While busy one afternoon, Jenelle snuck out of her play area, walked through our garage filled with boxes, across our front lawn, to the open front door of our next door neighbor's home, through their living room (avoiding many glass vases and figurines), through their open sliding glass door and into the deep end of their pool. And yes, Jenelle does not know how to swim.
Thankfully, God made sure there were some guardian angels watching Jenelle that day. Our neighbor's relative from Holland was lounging by the pool with his eyes closed. He had just asked the 14 year old if he wanted to swim, and the 14 year old declined because he had homework. As he laid in the sun, he heard the splash and thought to himself that the 14 year old had changed his mind. A few seconds later, he realized that he didn't hear anyone resurface after the splash. He opened his eyes, looked into the deep end, and realized a child he didn't know was sinking to the bottom. Jenelle had instinctively held out her arms, and he was able to grab her arm and pull her out of the pool without jumping in.
After coughing up water, Jenelle did not answer when he asked if she was OK. Because he didn't know her and didn't know that she couldn't talk, he called for the 14 year old, who ran down stairs, recognized Jenelle and scooped her up and took her to Brett. Brett was very calm as he took Jenelle into his arms. He simply looked at her shivering, cold body and said, "sweetie, you know you can't swim silly!" and took her inside to change her.
Not many people can truly say that they have saved a life, but the relative from Holland saved Jenelle that day. If he hadn't been by the pool, or if he had drifted to sleep, she would be dead. And my stomach lurches when I think of what could have happened. We are very lucky, and Jenelle will be taking swim lessons this summer!
Another change that will be happening this summer is that Jenelle will be going to a new school (the special needs program within our school district, not with the County) and to a new daycare. We toured the district's severe to moderate program at Benson Elementary in late May with the District representative, our advocate Janna from Epilepsy Support Net of Orange County, Jenelle's current teacher Joy and her current principal Renee. Two years ago when the District wanted to place Jenelle in this program, Brett and I did not approve. The program was just not right for Jenelle's abilities, and the District didn't even have a teacher! Wow, we were very impressed with how much the program had improved. This school is the perfect fit for Jenelle, and we are very anxious for her to start on June 27.
Another positive for the school is that they have a YMCA after school program on site that will accept Jenelle with a one on one aide. While we love our day care provider, who has taken care of Jenelle since she was 18 months old, this will be a good move for Jenelle as she will be with children her age. Her current daycare has kids ages 5 and under, and Jenelle just towers over the rest. The school bus will now pick up Jenelle from our new home, take her to school, where she will then be transported to the Y after school where we can pick her up. I'm always a bit hesitant about how Jenelle will handle changes, but I think in time this will be a great situation for her. Thankfully we will always be in touch with her current daycare provider through the Internet and Facebook! ;0)
Jenelle is scheduled to see Dr. Shields again at UCLA in the middle of June. I assume we will re-address the issue of the VNS. Speaking of which, her seizures have been about the same. When we started weaning Vimpat, I saw a drastic increase in seizures. Remembering what we had done in the past, I increased her dose a bit to give her more time. Since taking the wean slower, she is doing well seizure wise, but still have more seizures than we'd like.
The official baseball season has come to a close, and the playoffs and Championship games are upon us. Jack's team is playing for first place on Thursday, and Jenelle's Challenger team is playing another Challenger team in the area on Saturday at Curran Field. I can't believe how quickly this year has gone.
Also this Saturday the Epilepsy Support Network of Orange County is having it's annual Epilepsy Walk (formerly the Epilepsy Freedom Walk). Although Jenelle is playing baseball at the same time as the walk, we have started a virtual team (Jenelle's Avocados) in an effort to raise money. Please make a donation if you can by following this link: http://epilepsywalkoc.kintera.org/boocurran
That is all for now. I will update again after our visit to UCLA. Thank you for continued thoughts and prayers, and remember to hug your kids a little tighter.
Monday, March 14, 2011
Two trips to UCLA and Two Updates
Two weeks ago, I made the trip up to UCLA for my follow up with Dr. Territo. All is well with my numbers, and she wanted me to start another course of ATRA (Vitamin A Chemo.) The last 14 days have been exhausting as I've been taking 3 different chemo meds. Not to mention theo painful dry skin and cracked lips that go with the high dose of Vitamin A. Thankfully, tomorrow is the last day!
A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.
The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.
I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.
And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.
That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!
A few days later, I had a follow up appointment with my Opthamololgist at Hoag. I was diagnosed with Glaucoma many years ago, and before my cancer the doctor checked my pressures every six months. Since the cancer, and the chemo, she sees me ever 4 months as chemo can sometimes affect the eyes in unwanted ways. What was supposed to be a quick check of my pressures, turned into a much longer visit when I told the doctor that I was seeing small "spinners" in the visual field of my left eye. Upon further examination, I confirmed that there is a small area in the visual field of my left eye that "spins" or doesn't actually focus. When I cover the left eye to check the right vision, the same area is black. Apparently, this was concerning to the doctor. Disturbance in the visual field of this kind can often indicate problems in the brain behind the optic nerve. The doctor believes this is simply some damage from my chemotherapy, but wants an MRI, and an exam with a "retina specialist" for further tests. Not sure there is anything to worry about, but I will keep you posted. Right now, I'm just considering it as a "better safe than sorry" thing that usually happens to me in my post cancer life.
The other trip to UCLA was for Jenelle. We traveled today to UCLA for her 6 month follow up with Dr. Shields. We told Dr. Shields that Jenelle's seizures were still the same, but had decreased in duration somewhat (i.e. instead of a 4 minute grand mal, they last for 2 minutes.) Dr. Shields agrees that Banzel could be helping, but wants to get her off the Vimpat before we fully asses its value. I started the Vimpat wean tonight, and it should take 8 weeks to finish.
I asked Dr. Shields if he felt Jenelle would be a good candidate for the Vagus Nerve Stimulator (VNS). He said it was something to consider, and he will present her case to the neurosurgeon at UCLA for his opinion. We'll hear from them later if they think Jenelle would be a good candidate. As for now, we will stick with the medications and their doses, except for the Vimpat wean.
And, we received a bit of sad news today. The wonderful class with the County of Orange where Jenelle has been a student for 2 years is going to be closed June 30. This is the 4th year that the County has had to cut classes. This means Jenelle will need to be transitioned into a new severe to moderate class for special needs students; and most likely at a new school. I spoke with the County Principal today, and indicated that I wanted to tour all of our options, including the County Program in Anaheim, the County Program in Irvine, and the Severe to Moderate Classes in Tustin. Two years ago, it was my belief that the Tustin program was not a good fit for Jenelle, however, their program has been in place now for 2 years, and of course, Jenelle has changed as well. I am keeping an open mind about all of the programs in our area, and hope the transition will be a smooth one.
That is all for now! Thanks for the continued prayers and positive thoughts. I'll keep you posted!
Tuesday, February 22, 2011
You know you've been to the ER too many times when ...
... you get a message on your answering machine from your child's doctor, stating that your insurance has requested the doctor contact you to "remind" you to try to "seek help from your general practitioner, GI Specialist, and/or Neurologist during weekdays and work hours as opposed to going to the ER for non-emergencies." OH REALLY!?! I had no idea that is how it is supposed to work!
Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.
And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.
And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.
Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.
Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.
Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.
Yeah, that's it. That's the ticket.
~~~~~~~~~~~~~
In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.
Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.
Enjoy!
Silly me. And here, I thought that maybe, just maybe when your child's mic-key button has been out for an unknown length of time, and you had trouble inserting it yourself, so instead of puncturing your child's stomach you thought it might be best to take her to the ER, just in case she needed surgery.
And silly me. It wasn't my fault that Jenelle had a grand mal at school that lasted over 9 minutes, and they couldn't give her Diastat, so rather than risk a permanent seizure state or further brain damage, they called 911 and had her transported to the ER so she could get IV seizure medication.
And silly, silly me. When I was uncertain as to whether or not my child had swallowed a pony tail holder, and she didn't poop for 4 days and was crying inconsolably I decided she needed an x-ray and went to the ER; in case she needed surgery. Only to learn later the poor child was constipated.
Maybe if my child could talk, I wouldn't abuse the ER so much. Maybe I like the special treatment and attention I get when I taker her to the ER. Maybe I enjoy subjecting my immune compromised child as well as my post-cancer/chemotherapy immune compromised self to the endless patients lining the halls with fevers, coughs and vomit at the ER in hope of getting sicker.
Hmmmm. Wait just a minute. Let's hear that again. Oh yeah. I'm the one forcing my child to make needless trips to the ER for "non-urgent" things like seizures and a missing mic-key button. I'm the reason it takes at least 4 hours to get in and out of the ER, even when you arrive via ambulance. Certainly not the endless individuals lining the chairs and hallways with their cold germs and flu. Certainly, their medical needs are much more "urgent" than mine because we all know, only the ER has the cure for the common cold and the flu, but they just won't let those darn general practitioners in on it.
Or maybe... just maybe... Its because I actually have insurance... therefore the ER has a way in which to contact me to request I not come in so frequently for "non-urgent" matters; as opposed to all those other patients without insurance who are there because they really don't want to fork out money to a doctor when they can get health care at the ER for free.
Yeah, that's it. That's the ticket.
~~~~~~~~~~~~~
In all seriousness; there was an actual message on our answering machine last Friday from Jenelle's pediatrician, Dr. Patel - whom I love and adore with all my heart. She actually said on the machine that my insurance asked her to call, to make sure I knew not to use the ER for "non-urgent" issues that could best be handled by her, Jenelle's GI or Jenelle's Neurologist. I called her back and we both had a good laugh, but she said that Jenelle's medical group (St. Joseph's Heritage Medical Group) was really "cracking down" on people who frequent the ER. I told her, "You know me. You know I'm not going to the ER unless it wasn't absolutely necessary." She agreed, but said she was just doing her job. She had received a letter from Jenelle's medical group instructing her to call me to discuss the issue. I can totally respect that. I just hope St. Joseph/CHOC ER is reaching out to the real offenders; the patients that go to the ER because they don't have insurance or a real doctor.
Thank you for listening to my rant. Now, for your viewing pleasure, I want to share a video clip I took on Monday of Jack and Jenelle "jumping" together at the Little League field. Jenelle can jump a whole lot better than she does in this video, but it was just too cute not to share. Jack has turned into a wonderful, caring big brother and loves to give Jenelle hugs, hold her hand when we walk her places and take care of his special little sis. It just makes me happy to see the two actually starting to have a sibling relationship.
Enjoy!
Tuesday, February 08, 2011
Less seizures, but still fighting the seizure monster!
When I haven't updated in a while, it can mean many things; Jenelle is sick, I'm sick, We're just really busy, and/or I'm just don't want to jinx anything. This time, it's the later of those choices!
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Monday, January 17, 2011
Remembering Dr. King and taking his dream to new heights
Today is Dr. Martin Luther King, Jr. day in the United States. It is exciting to know that Jack cannot fathom the idea of racism and prejudice. However, sadly, members of our community continue to fight stigma and prejudice. I believe there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuals are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" fulfilled in this way...
I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?
"I say to you today, my friends, so even though we face the difficulties of
today and tomorrow, I still have a dream. It is a dream deeply rooted in the
American dream. I have a dream that one day this nation will rise up and
live out the true meaning of its creed:
We hold these truths to be self-evident: that all men are created equal.
I have a dream that one day on the red hills of Georgia [people living with
physical and mental disabilities and people without disabilities] will be able
to sit down together at the table of brotherhood...I have a dream that [children
with special needs] will one day live in a nation where they will not be judged
by [their disability] but by the content of their character. I have a
dream today."
I share that dream with you Dr. King. We've come so far, but we still have more to do. Will you help me make this dream a reality?
Sunday, January 02, 2011
Welcome 2011!
Well, if I had any grand hopes that the New Year was going to be seizure free for Jenelle, they went out the window this morning when Jenelle had another 4 minute grand mal. I've been home with Jenelle all week as she is on break without daycare, and I still honestly think we may be on the tail end of getting her meds right. Since adding Vitamin B6 and finally making it to the prescribed dose of Banzel, there has been some noticeable improvement with her absence seizures (i.e. - we are seeing less!) It is still too early to tell, and Dr. Shields said it could take at least 6 weeks at the prescribed dose of Banzel until we start seeing a significant difference. So, the seizure today while discouraging, is still acceptable in that we don't have to give up just yet. I'm encouraged that at least one seizure type seems to have improved, although I hate watching a grand mal as they are so horrific.
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!
And, Jenelle had a trip to the ER this week, but for once it was not seizure related. As Elmo on Sesame Street says, "Everybody poops!" to which I say "except Jenelle!" Poor Miss Jenelle has been dealing with a horrible bout of constipation since before Christmas. Last Tuesday, Nicki and I took the kids to Irvine Park with a picnic lunch from Burger King. As I was feeding Jenelle a cheeseburger, she began to scream and cry. Jenelle loves her food, so this was definitely not normal. I started to think back in my mind, and realized her last significant BM was on Christmas Eve. Ironically, the day before Jenelle had swallowed what I think may have been a pony tail holder. I then started to do the math, and worried that she had an obstruction or blocked intestine. I left the boys with Nicki at Irvine Park and Grandma met us at the gate and took us to the ER.
The ER was jammed packed, and it took us 2 1/2 hours just to get to triage. When taking her vitals, I joked with the nurse and suggested we just get an x-ray while we were still waiting in the lobby. She actually agreed that it would be a good idea to speed things along. Half an hour later, we were called back for an x-ray; an hour after that we finally saw a doctor. The good news is that they could not see an obstruction, and the bad that Jenelle was full of stool. Two adult sized enemas later and she passed some stool, but not what we were hoping for. The doctor sent us home with advice to give her Miralax daily for the next 6 months. We think her medication could be making her constipation worse.
Since coming home, Jenelle has had a hard time (no pun intended) with her bowel movements. The only way she has passed stool is from the help of a glycerin suppository or an enema. I called our pediatrician two days later for advice, and he said not to worry as long as we were getting something out. He warned not to use the laxatives and enemas too frequently because she could become at risk of becoming dependant on them. Every other day was acceptable.
Other than the BM issue and today's seizures, it has been a wonderful holiday. I've been meaning to post photos, but find that when I have a few spare moments, a nap is more attractive than playing on the laptop. I'm doing well and (knock on wood) have managed to avoid illness this holiday. Even with the 6 hours in the ER for Jenelle.
Jack celebrated his 10th birthday on Saturday. We had 7 boys spend the night on New Year's Eve and celebrated his birthday for once with friends on the actual day. Last night before going to bed, Jack announced that he was now a "tween". Oh boy, here we go!
I really think 2011 is going to be a fantastic year, and I'm not just saying that because 11 is my lucky number. I think we'll finally gain back the seizure control we lost for Jenelle and my health should continue to improve as well. My only New Year's Resolution is to finish chemotherapy this year; and if all goes well, that will happen in August!
Thank you for continued thoughts and prayers. I'll post some photos soon!
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