Monday, November 19, 2012
This weekend, Jack's travel ball team had it's first tournament of the new season in Fountain Valley. Grandma was watching Jenelle as I was keeping score - they were walking around behind the back stops. We were at one of those multi-field places where three back stops back up to each other, and there was a game going on at the field behind ours. All of a sudden, I saw Grandma violently fall to the ground. Instinctively thought she was hit by a foul ball, and dropped everything to get to her. It was then I realized that it wasn't a baseball at all, but Jenelle had fallen to the ground due to a "drop seizure" and took Grandma to the ground as well.
Two gentlemen friends of ours ran to help me with both Grandma and Jenelle. Grandma was OK, but with her history of back and knee pain I knew she was going to hurt later because the fall was pretty hard. We helped Jenelle stand up, and she remained quiet for quite a while. It was then that I realized she was in an absence seizure. With Jenelle, there is always a delayed reaction, and Grandma said Jenelle hit her head pretty hard when she fell. As we waited for some sort of reaction for Jenelle, I realized we needed to start timing the seizure. Two minutes had already passed. Absence seizures are very tricky to spot, this because often times the patient seems to be somewhat alert. Jenelle was smacking her lips, chewing, and blinking here eyes while looking around. Definite obvious signs of an absence seizure. I confirmed it was a seizure by holding her hand and arm; you could almost feel the electricity pulsating in her. When the timer on my phone reached 4 minutes, we moved her to the grass. After 5 minutes, Jenelle was still not seizing so I gave her Diastat.
Unlike her usually response, Jenelle did not immediately come out of her seizure after the Diastat. One of the parents on our travel ball team is a doctor, so I asked for him to help me track her heart rate and breathing. Luckily, she did real well with the Diastat, and her heart rate did not drop. Having a doctor nearby was easier than having to call 911. Just as we approached the 9 minute mark, and me thinking she needed a second dose of Diastat, Jenelle finally came out of it, and acted as if all was normal.
I watched over her closely the rest of the evening, and later Jenelle was giggly and acting very normal. We were worried with her hitting her head, but other than the seizure she showed no signs of any concussion. The other good news is that after the Diastat, we didn't seem to have any follow up/cluster seizures. Once again, Diastat saved the day, and a trip to the ER. Thankfully the doctor parent on our team saved us a 911 call as well! I'm still not sure if it was a drop seizure, that went into an absence seizure because of the hit to the head, or if it was one long seizure. Regardless, it wasn't as bad as it could have been. OH, and Grandma is very, very sore - poor Grandma!
Thank you for continued prayers - as always, I'll keep you posted!
Friday, November 16, 2012
This year, I want to talk about Sudden Unexplained Death in Epilepsy, also known by the acronym SUDEP. SUDEP is “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with epilepsy with or without evidence of a seizure, excluding documented status epilepticus, and in whom post-mortem examination does not reveal a structural or toxicological cause for death.” In other words, an "unexplained death in someone who has Epilepsy."
I mention a lot on this blog about how we've been told that Jenelle has a short life expectancy, but I don't think I talk much about why that is... for obvious reasons I hope. Death is not a topic that we like to discuss, let alone the possible death of one's own child. This week, I have been struggling a lot with the recent death of a friend, with Jenelle's mortality and my own. I felt this topic was very fitting this year.
My friend Enid was diagnosed with breast cancer six months after my initial diagnosis with AML four years ago. She fought hard and we mutually inspired each other in our fight. She went into remission, but a year later her cancer returned. She died last Saturday leaving a husband, and three young children; and here I am poised to celebrate my 4th year in remission in December. All the questions I have, and all the "what ifs" and that could be me - Survivor's guilt is a bitch.
"Well, you are finally catching up! I embraced that thought a long time ago and realized there is nothing I can do about it. She's going to go when it's her time, it's going to be quick, and all I can do is hug her each day, tell her I love her, and enjoy her while she's here."I see it that way too; I know every day with Jenelle is a gift. However, as she gets older, we are entering unknown territory with Jenelle, and when friends you hope will survive against all odds die, you just feel a little less secure in your optimism.
This is what is feels like to know you have a medically fragile child. To realize that she will have a "sudden, unexplained death because of her epilepsy." Patients like Jenelle with Lennox Gastaut have a high rate of morbidity due to "accidents"; in that I'm reminded of her accident falling into our neighbor's pool more than a year ago. Accidental death can occur during a seizure if the patient has a fall when seizing, or an accident driving a car when a seizure occurs (assuming the patient is driving), or drowning due to swimming when a seizure occurs, etc. One of the biggest concerns for Jenelle is Status Epilepticus - or constant seizure state, which can in rare cases can end in death. It seems like a lot of this can be prevented with common sense really, but like we realized after Jenelle's fall into our neighbors pool, anything can happen.
The strongest weapon we have against death in epilepsy, is advocacy and education. Educate yourself on what to do during a seizure, and educate yourself on what to look for. Know the recommended first aid response. Advocacy is key in helping others know what to do and what to expect. When you know what to expect and what to do, it isn't as scary as it sounds.
Since Jenelle's initial LGS diagnosis in 2005, the Internet seems to have blossomed with new information. Here are some wonderful and informative new links that I found in researching this post, and that I will add to our side bar of links.
About LGS (this site sponsored by the drug Onfi, which Jenelle started taking in July)
Epilepsy dot com
Remember to wear your Purple this month and remember to talk about Epilepsy Awareness!
Thursday, November 01, 2012
Obviously, I'm not anti-drugs by any means. I used them briefly when Jenelle was going through the worst of her seizures, and it helped keep me focused. I remember clearly the day my doctors put me on the anti-depressants with my cancer diagnosis. It was three and a half years ago, February 2009, and I was quickly spinning into a deep depression. I was in the hospital in Santa Monica because I had no immune system (0 neutrophils) after my second round of chemo. I felt completely fine and wanted desperately out of the place. I was so desperate, there was a morning where I sat on my hospital bed, bags packed, in street clothes ready for the onslaught of doctors with their entourage of medical student that would eventually arrive at my door to tell me my numbers. I was determined to discharge myself against doctors orders if the numbers hadn't improved, and take a bus home if I had to.
Upon entering the room, the doctor told me that his students had to literally push him through my my door. The entire team knew that they were about to deliver news I did want to hear. That I still had 0 neutrophils, and that I wasn't going anywhere. I remember that feeling of disappointment; I cried hysterically and wanted desperately for there to be some way that I could go home to Brett and the kids. So I could sleep in my own bed, and feel normal and comfortable once more. After the bad news was delivered, they left me alone with a blond nurse (whose name I cannot remember) who stayed by my side all day, stoked my hair, helped me unpack and just let me sob. I was literally on suicide watch, with doctors, nurses and staff checking in on me every hour. I didn't realize it at the time, but the cancer and the chemo had sent me spiraling very quickly into depression. The next day, an anti-depressant was added to my daily drug regime and when I was finally released 4 days later (14 days total), I realized that the pills were just as important as the chemo in helping me survive the cancer.
This summer, I knew I was ready to wean off the drugs. I'm always happy and optimistic, so I knew that wasn't drug induced; however this summer I realized I hadn't been showing or really feeling any emotions. And I'm talking the good emotions like laughing so hard that you cry, or getting a lump in your throat with pride for something your child has done. Having had experience with weaning Jenelle on and off medications, I had a good idea what to expect when I started the wean. For my close family, friends and co-workers; you know the last few weeks have been quite an emotional journey! I knew it was my brain, and hormones sometimes over-reacting to tiny situations that on the happy pills wouldn't normally bother me. I was fully aware that my brain chemistry levels were slowly getting back to normal.
About three weeks ago, I would categorize my emotions as "bat shit crazy!" I had road rage, and snapped at every little scenario that sounded the slightest bit confrontational, and I was just a raging hormonal mess. It was quite a journey. But I survived, and today marks one month that I am completely anti-depressant free - it feels fantastic! I have real emotions again, even moments when I have a good cry! I'm still happy, optimistic, sarcastic and finding humor in everyday life. Only one more year until I'm officially cured... and I'm really starting to believe that will soon be a reality!
A few weeks before Jenelle's 10th birthday, Jack asked me if I ever imagined that she would be 10 years old. In all honesty... yes. I imagined a 10 year old Jenelle. And I can imagine a 16 year old Jenelle, and a 20 year old Jenelle. Doctors tend to tell you the worst to prepare you for the fight ahead when really no one knows the end result for sure.
Jenelle's life with us has been an amazing gift that has changed our lives in so many ways. We see the positive in every situation, we are compassionate, and we realize the miracle we have been so blessed to share with the world.
15 years ago today, Brett asked me to marry him. On that day, neither of us imagined the challenges that would be thrown our way - but we have survived together. What a wild ride it's been!
Monday, October 22, 2012
Thursday, October 11, 2012
Tashi is in the midst of undergoing a stem cell/bone marrow transplant that could save her life. However, that fight is not without its risks. Last night, she posted an update that she has been fighting a fever of well over 103 and an ensuing rash for the last 5 days. This resonated with me as I remembered my own battle with fever and rash that nearly took my own life in June 2009.
My mantra during cancer was KCA - Kick Cancer's Ass. In June of 2009 we added KRA to that mantra, "Kick the rash's ass" or "Keep the Rash Away! As I look back at that post, and the photo .... it's just a horror I would not wish on any human being. Ever. I'm thankful that because of my state of mind during that time, I still do not remember much of the experience. Recently, more than three years later, Brett is beginning to share with me some of the horrific things that happened, and just how close I came to dying. I can only imagine what Tashi is going through, and that is very unsettling to say the least.
Please take a few minutes today. Think of Tashi. Say a prayer for Tashi. Pray that her white blood cell counts start to rise. Pray that she can beat this! KCA. KRA. We love you Tashi!
Monday, October 01, 2012
Last Wednesday, I got a call from Jenelle's occupational therapist who was going to be missing Jenelle's IEP. One of her goals for Jenelle last year was not met; they have worked on trying to get Jenelle to feed herself with a spoon and it was very, very unsuccessful. We agreed to put the goal as a "collaborative" goal for all of Jenelle's IEP team to work with her on. Then, the kicker... "Oh, and I will personally see to it that Jenelle makes up the 20+ hours of therapy she missed last year." Uh, what? Jenelle missed 20+ hours of Occupational Therapy??? And, this is the FIRST I've heard of it? I was livid and went to the continued IEP on Thursday with my "law firm" attitude in check.
In the end, Jenelle has really been doing well, but overall unsuccessful in two goals - feeding and potty training. Thus, here is where the "smaller" class may be of more benefit. Last year and this year, I've always felt that Jenelle's new class and teacher seemed to be more focused on "academic" skills (i.e. pointing and tracing her name on a smart board, identifying colors and money, etc.) I've always wondered whether or not it was a big of a big step for her. There is another class for severe to moderate children at Benson, but it has 5 students in the class instead of 12. At the end of the IEP, we agreed that once the District hires an additional aide, the smaller class would be a better fit for Jenelle.
Medically, Jenelle is stable. The decrease on Onfi has been a good change for Jenelle, except now we are seeing many more absence seizures. Not enough to cluster, but enough to be disruptive. I've been waiting to see if it stabilizes and soon will consult with Dr. Shields to determine if this is the best we can do. Also, a week ago Jenelle started seeing Dr. Gudapati, a child psychiatrist to discuss her behavior issues. This is the same doctor that has been seeing Jack for ADHD for the last 4 years. Normally, Brett and JD go to his appointments without me - after school and before practice. After discussing all of her medical history, Dr. G felt that Jenelle's Risperdone dose was adequate for Jenelle's behavior issues (biting herself and pulling out her hair.) She added on Clonopin wafers for an "as needed" additional drug for those days her behavior gets a little worse than normal.
So, that is all for now. I'll keep you posted.
Tuesday, September 11, 2012
I felt overcome with the need to write this letter to you about the events going on in the world right now. At this time you are only 8 1/2 months old, and oblivious to the horrible tragedy that has happened in our Country. When you get older, you will want to understand and know more about what happened. I feel that maybe in some small way, you sense what has happened as both your Father and I are deeply saddened, stunned, worried and shocked by the events on the east coast. Life is not normal for us right now, and our usual day to day schedule is different. How could you not notice that we feel hurt and at the same time a sense of pride to be Americans?
You were born on the first day of this year. For your Father and me, every day since that day has been a blessing and a joy to live. You amaze us and make us smile everyday. We are truly blessed by your birth. ... This time next week, our country could be at war, even though our enemy is still unknown.
A common thought right now among most parents is "why did I bring children into this world of hate and such terror?" I have not thought that, nor felt one moment of regret for having you this year or during this time of sadness in the world. Having you has changed my life, as well as my values. You are the one true thing that your Father and I created in this world all on our own and out of our love. You give me hope that there is innocence and purity in this world, and hope that there can and will be world peace one day.
Sadly, as you will learn in your lifetime, tragedies like this can and will happen. They may not be an act of terrorism, but sometimes there are events such as an earthquake or storm that will take many lives and move you more than you ever imagined. How we choose to react to such events, make us strong individuals and better persons.
Right now, the future of our Country is uncertain, as we certainly will go to war against this unknown enemy. Know that pride in America is higher than ever. We proudly display our American Flag outside the house and thank God each night for our lives together, for you and for our freedom. I hope that the actions our County will take in these next few days will make you and your generation proud to be Americans in the years to come. You were born into a country of Freedom, and that is our gift to you that you should never sacrifice.
God bless you my son, and God bless America. You are my hope that peace will overcome.
All my love, Mommy
Wednesday, August 29, 2012
Jenelle started Challenger Cheer again on August 1, but unfortunately the second side effect from Onfi began; sleepy, drugged our little girl. At JAMZ Cheer camp one Saturday, Jenelle slept through the entire 3 hours. Even though she slept, she earned a couple of JAMZ ribbons; one for "rowdy cheer" and another for "amazing stunts!" I guess sleeping in a wheelchair is considered a cheer stunt!
So, this went on for a few more days. Brett and I started to feel concerned when Jenelle's YMCA Inclusion Aide sent me a photo of Jenelle sleeping all day at summer camp. While we hadn't seen any seizures since starting Onfi, we started to consider whether or not her quality of life was being significantly impacted. Yes, it's wonderful to not see 3 and 4 minute grand mals every other day, but what happened to our little girl? She can't walk, she can't stay awake, she won't smile... where did she go?
Wednesday, July 25, 2012
Tried to get a photo of our girl during dinner last night, but she just wouldn't have it. Still no "significant" BM - some relief from an enema, but still pretty constipated. In response to hearing about Jenelle's constipation, Big Brother JD said, "Mom, when Jenelle finally drops one, it's going to stink up the whole house!" "Drops one?" - Seriously? Never heard that before! At least we still have our sense of humor!
Continued prayers for Jenelle please, that things start to pass soon!
Tuesday, July 24, 2012
As luck would have it, the next morning I got a call from Dr. Shield's office. Immediately, I explained how I had been in contact with our pharmacy, and that the pharmacy swears they've faxed the forms 3 times to UCLA's number, and that I was really getting desperate to put Jenelle on this new drug and all the pharmacy needed was the Diagnosis Code, etc. Then there was silence on the other end and I worried that I had finally pissed them off and they were not going to be nice to me anymore. "Hello, did I lose you?" I said, and the women on the other end of the line said, "Actually Mrs. Curran, I don't really handle that, and I was calling you about the school forms Jenelle's nurse faxed to us, but, give me the number for your pharmacy, and the pharmacist's name, and I'll see if I can help!" Sweet Angel from God! Not only did we finally get Jenelle's medical instructions in place for school year, this woman called the pharmacy, approved Onfi, and gave them the authorization code to approve payment by Medi-Cal of the Non-Generic form of Felbatol! All of my problems fixed in one call! Although the run around and formality of the process can be frustrating at times; I absolutely love UCLA for moments like this. The dedication and team attitude they have towards the care of their patients is above and beyond job description.
So, Jenelle started Onfi on Saturday. Side effects include constipation and drooling. Oh Joy! Immediately I doubled her dose of Miralax because Jenelle hadn't pooped since Thursday evening. On Sunday, the boys had a baseball tournament in Pomona and we had another hot weekend. Jenelle was starting to act very lethargic so I opted to stay home with her on Sunday. It was rather relaxing day as she and I took naps all day. Unfortunately, not poop! Monday morning, it took a lot to wake Jenelle up for the 7:30 am bus, and even more effort to get her to walk onto the bus. In the back of my mind I also knew we still hadn't had a BM, but I was hoping for the best.
Around 10:30 am, the school nurse called and was very concerned about Jenelle. She had had a pretty rough morning trying to get comfortable and was mostly sleeping when she wasn't crying. The nurse also said she thought Jenelle might have a tummy ache because she had trouble walking as she was stooped over. I then explained the constipation side effect of Onfi, and we both agreed Jenelle would be more comfortable at home. Daddy came to the rescue and picked her up from school while Grandma Curran stopped by later to administer an adult sized enema. Brett says she slept most of the day, and when I got home around 6:30- still no poop! Around 8:30 pm, I gave Jenelle another adult sized enema where she finally had some relief with a small BM. Unfortunately, she still has some pooping to do!
The nurse reported this morning that Jenelle was in better spirits today, and was much more alert. I tried to remind Jenelle that Elmo says "Everybody Poops!" but I don't think she gets it just yet. As a precaution, I've increased her water intake by giving her water by syringe via g-tube to help get things moving. I'm confident, "this too shall pass!"
Seizure wise, things are good, but it's still too early to tell with the new drug. Please keep us in your prayers that things get moving soon for Jenelle. Thanks, and I'll keep you posted!
Thursday, July 12, 2012
Monday, Jenelle will be seeing a new pediatrician (or new to us). Dr. Sangeeta Patel who was Jenelle's doctor since birth stopped taking Cal-Optima (MediCal) and with a lot of Jenelle's medical needs like diapers and wheelchairs, etc. only being covered by MediCal, we were forced to switch to another doctor who is taking Cal-Optima/MediCal. The appointment is to check on her scoliosis, but obviously we'll be introducing ourselves to a whole new medical team. We are still in the same "medical group" HMO wise, so all of her existing authorizations to specialists like Dr. Idries and Dr. Shields will remain in place. Ah the bliss you find in jumping through the hoops of the health care industry.
In January, I told you about my own personal issue with my being borderline Diabetic. I had labs done in December that had my triglycerides up way too high. I told my doctor to give me time to get on a diet and try to fix it on my own rather than start medication. I did really well at first with a change in diet - I lost 10 pounds and felt better. Then Easter came around and I cheated by eating candy and simply fell off the wagon. Worse, I gained all the weight back! Unfortunately, my recent follow up lab work showed the triglycerides had INCREASED (from 290 to 380!) I met with my doctor this morning and she laid down the law - lose 30 pounds, exercise and NO CARBS.
As I left her office, I threw away the left over pizza I brought for lunch and went to Gelson's by my office and purchased a Turkey Spinach Pinwheel. I will change my diet for the better, I will lose the weight and I will not need Diabetes medication! This is my mantra! I see my doctor again in 3 months.
That is all for now - I'll keep you posted.
Monday, July 02, 2012
All four of us made the trip up to UCLA today for Jenelle's follow up. I packed a picnic of sandwiches, chips, bagels, cheese and Nutella - Jenelle's new favorite! Dr. Shields was on time and spent a lot of time with us. The last two months, Jenelle's seizures have increased dramatically - 1 to 3 grand mals a week, at least. On the last day of school and during JD's 5th Grade Promotion ceremony, Jenelle had 3 grand mals lasting over 3 minutes. Her first seizure that day was early in the morning, and she had missed her meds. After the third one, I simply gave her Diastat in stead of her her missed meds. It worked, thankfully.
Recently, Jenelle had a physical with her regular doctor, and her weight increased by 7 pounds! Originally, I had thought that was the culprit, but Dr. Shields' records showed only a 2 1/2 pound increase, so he didn't think the weight increase was the problem causing the increased seizures. Later I had realized, it had been over a year since Jenelle was seen by her pediatrician, and 6 months since seeing Dr. Shields. Makes sense.
So, the new plan: We are adding a new drug, the one Dr. Shields had mentioned in November, but was still not approved by the FDA. Its called Clobazam, and trials have shown that it tremendously helps patients with Jenelle's seizure disorder type (Lennox Gaustaut Syndrome.) We will slowly increase the dose each week and stop once we reach the max dose or before the max dose if we see seizure improvement. Nothing new there, we've done start before. Once we are on Clobazam, if it works, we'll start to try to wean her off Felbatol. That is the seizure plan for now.
Oh yes, new problems. A week ago, I took Jenelle for her cheerleading uniform fitting. This year, the league is going to purchase shoes, so Jenelle's foot was sized. I knew she needed new shoes, but was rather surprised by her shoe size, or rather "sizes." Jenelle's right foot is a size 1 1/2 womens, and her left foot is a childrens size 13. Yes, one and a half size difference. I realize this is not uncommon, and I know lots of people with different shoe sizes fore each feet. What made this information more curious is that a few days later, Jenelle got her new ankle support for her right foot.
Around the start of baseball season, we noticed that Jenelle was turning out her right foot, and walking almost completely on her ankle. It looked painful, so I put in a request for new AFOs since she hadn't been wearing them for over a year. When we went to get casted for the AFO, the specialists felt that Jenelle would do better with an ankle brace, similar to one worn by a basketball player. He casted her foot in the same matter for AFOs and order a special fitting, lace up ankle support. It arrived last Friday, and I took Jenelle for the initial fitting.
After strapping on the support, the specialist had Jenelle walk down the hall to see if it helped. We then realized that she was walking almost drunk like and leaning to her right. The specialist immediately noticed that her left leg was shorter! After trying different inserts, he determined that Jenelle's left leg is a good 3/4 inch shorter than the right. With the proper lift insert, she stands perfectly and walks really, really well. Our specialist recommended we see her pediatrician to check on possibly scolosis. Jenelle's had noted scolosis the last two years, but not significant enough to take any action.
Today, I mentioned this new "problem" to Dr. Shields. Before I could mention scolosis, Dr. Shields compared Jenelle's hands and noticed that her left hand is much smaller than her right. Jenelle has always had weakness on her left side, and we have just assumed it was a result of whatever "damage" may have occurred on the right side of her brain in utero. Dr. Shields called up Jenelle's last MRI and PET scan from April 2008 to confirm. That PET scan showed signs of "slower metabolic absorbtion" in the right frontal lobe. Because of this, Jenelle's left side of her body is not growing as fast. Brett asked if there was something we could do to stimulate growth in the right side, and unfortunately, there is no way to cure it.
This "new problem" really isn't earth shattering (or rather, life threatening) and doesn't change anything in Jenelle's treatments; however as she gets older, we may run into some problems with her mobility if the other side doesn't catch up. As always, only time will tell. In the meantime, I'm still going to check out her scolosis to make sure that hasn't gotten worse.
After her appointment, we took the time to walk on campus with Jenelle and JD. Brett and JD climbed the stairs of a parking structure to look onto the football practice field, and eventually we found our way to the UCLA Hall of Fame. JD and Brett were mezmerized with the John Wooden Den (a replica of his home office) and we counted each and every one of UCLA's 108 NCAA Championship trophies. I was very proud to find an old photos and videos of my cousin, Laurie Jones, who played on the 1990 and 1991 UCLA Women's Volleyball NCAA Championship team. When I pointed out her photo, JD said, "That's Abby and Tessa's Mom! She's very young!"
In all, it was a great day. I'll definitely update more as we add in the new drug. Here's hoping we get back that seizure control we once enjoyed so long ago! Thanks for continued thoughts and prayers. I'll keep you posted!
Saturday, May 26, 2012
People say it all the time; kids grow up way too fast. It's hard for me to believe that Jack has 3 more weeks in elementary school and will be headed to Middle School. That I'm actually looking at adding another cell phones to our plan so he can have one. I can't believe that this season of Little League is over, and that Jack has one year left. Time goes by so fast.
In mid April, I saw a story in the Register about a Hummingbird web cam that was following a Momma Hummingbird named Emma, and her two eggs. The eggs were just about to hatch, and I became obsessed with watching the camera feed. I had it playing at work in the background of my computer screen and checked in periodically. Although I missed the first egg hatching, I witnessed the birth of the second baby bird when it hatched during my lunch one day. Within a weeks time, these babies went from tiny raisin like creatures to something that resembled a baby bird. As you will see at the website, the nest itself is slightly bigger than a quarter, the babies the size of a penny, and the eggs the size of Tic-Tacs! I kept in touch with this web cam, and their Facebook page for two weeks, and watched these birds transform from eggs to full grown Hummingbirds. From birth to fledge, all in little over 21 days. Time goes by so fast.
Jenelle's seizures have been consistent, and last night after her 3rd two minute grand mal I decided to page the on call doctor at UCLA to decide on a game plan. The seizures had been hours apart, but it isn't like Jenelle to have so many in one day. It is always nice to talk the situation over with the doctor so I don't second guess myself. The on call doctor at UCLA agreed that we should consider using Diastat with the next seizure should she have one regardless of how long it goes. Sometimes even half the dose of Diastat will give her the break she needs. Luckily, I monitored Jenelle until putting her to bed and the rest of the evening and morning was uneventful.
At Jenelle's recent GI appointment, we found that Jenelle has gained 6 pounds in the last four months. That is probably the culprit that is wreaking havoc on the seizure control we once had. The on call doctor suggested I e-mail Dr. Shields on Tuesday to discuss increasing Jenelle's usual meds since we won't be seeing him until July. Sounds like a solid plan to me!
In the next hour or so we'll be off to watch Jack's travel baseball team play a tournament in West Covina. Hopefully it will be a good day for Jenelle, and the Tustin Rampage. Enjoy your Memorial Day Weekend, and remember to reflect on it's true meaning. Remember the men and women who have made the ultimate sacrifice in the name of our country, and for our freedom. Thank you for the prayers and positive thoughts. I'll keep you posted.
Saturday, May 12, 2012
To my surprise, this afternoon a flower delivery arrived from my Mom and Dad. It is a beautiful assortment of tulips and hydrangia. When I woke from resting, the lovely arrangement made me smile, then feel horrible since I haven't purchased a Mother's Day card for my own mom. I usually at least remember that! So, for my Mom on Mother's day, I give you the only thing I can... the long awaited photos of the grandkids! :)
|Nana's 80th Birthday|
|Nana and her Grandsons|
|Me, JD and Jenelle at the Angels game on Easter!|
|JD as honorary bat boy with two kids he didnt' know.|
|My nephew Trevor being Guest PA Announcer!|
|He has my eyes.|
And finally, if you are still reading... I notice that this work by Erma Bombeck seems to get a lot of hits on this blog this time of year, so I thougth I'd share it with you all once again. Please enjoy this piece by Erma Bombeck, one of my favorite writers.
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son, patron saint, Matthew.
Forrest, Marjorie, daughter, patron saint, Cecilia.
Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."
Sunday, April 22, 2012
Recently, Brett and I have been watching the new Kiefer Sutherland show "Touch" on Fox. As you can imagine, we relate to Kiefer's character because his son is non-verbal like Jenelle. Usually, the show begins with some narration from the boy. One of the opening narrations in a recent episode really rang true for me. The boy talked about how in life our goal is to be heard; whether through music, art, success, writings... it's a natural human instinct to throw our thoughts, ideas and words out into the world and feel the connection of immediate feedback. This resonated with me and I immediately thought of this blog.
Jenelle has been having more seizures of late. Our next appointment at UCLA is in July, but I'm not so concerned I think we need to get in sooner. She really has matured so much this year, and I think her new school and the YMCA get all the credit. Being with children her own age really calms her, and we see less frustration, even if we aren't communicating any better than before. I can't wait for the day when I can talk with Jenelle and ask her all the things I've wanted to know. We have a special kind of relationship that I could have never imagined having with a daughter. I just hope that things continue to improve.
Jack is also changing, and showing signs of developing a closer relationship with Jenelle. The other night when Jenelle was asleep on the floor after a seizure, I noticed that Jack snuggled up behind her and put his arm over her side as if to hug and spoon her. In her ear, he whispered that she was going to be OK. It was beautiful. He likes to take her hand and jump or dance, and he love to try to make her laugh. Its amazing to me because it isn't something we've tried to push on him... it just comes naturally. The love she gives us and gets in return.
Brett and I are managing to survive day to day with emotions and such. When you think of all we've been through, there is no surprise that we are struggling emotionally. Our relationship has so many special and amazing qualities, I just know that we will get through these last few struggles and find happiness. I promise to post some photos soon. As always, thank you for the prayers and support - please keep them coming!
Friday, March 16, 2012
Jenelle finally got her repaired wheelchair back a week ago, and the same abductor is tearing again. She has really kept us on our toes of late with mic-key button replacements and seizures. In fact, the same button we replaced a week and a half ago had to be replaced this morning. I hope this doesn't turn into a new trend. She is happy though, and loves baseball right now.
I'm doing well - had another follow up at UCLA this week. My blood work still shows the effects from chemotherapy 6 months ago, but my energy level is much improved and of course, cancer tests are still clear. The new "less carb" diet is going well and I've officially lost 10 pounds. I re-test my blood work in a few weeks to make sure we're going in the right direction.
So, now it's time for something I rarely do - show my fragile side. Mentally, emotionally ... in all honesty... I'm hanging on by a thread these days. Bear with me...
Three years later, my cancer is still affecting our family. I'm well now, but the worry, the depression, and all the work we still have to do to get back to the way things used to be before the cancer are still present. We still fight it daily, and we are barely surviving.
I know that no one would ever tell me that I haven't made an effort. That with Jenelle, and my cancer, and the recession and recovery that we are all facing - no one would blame me or be surprised if I just gave up and moved on (in life, not as in exiting this world.) The odds have always been against us from the beginning. Most people only face one of these events in their life and/or marriage - surely the fact that we've made it this far means we've done well, right?
I am human. I fear that every day is the day Jenelle begins to regress, or worse, her last. With every bruise and ache or pain, I worry that my cancer has returned. Everyday I check the mail to see if I've been paid, and then I worry if that money will be enough to pay a bill, or the rent. I worry that my happy pills are just blurring my reality just enough to convince me that things are improving when really they aren't. I pray each morning my car will start. This is my reality.
As a Christian, I have faith that God has purpose for me, for my family, and that certainly this has to suffice. I see myself as a modern day citizen of the second Great Depression; that surely I'm not the only one suffering in this day and age because of our economy and the rules of our society. I sometimes wonder if the "end of days" as the Mayans predict in December 2012 wouldn't necessarily be a bad thing. I guess I'm just human... waiting for some miracle, or some extraordinary event to shake things up in my life.
So, that is where I am emotionally. Putting it all out there for the world to see. Letting you know, that I'm no saint. Thank you for letting me vent here. This blog has been so therapeutic, and I know I haven't lost all hope. When I'm feeling so down, I think of all of you. Those who find inspiration in my life experience, and those who reach out to tell me. I'm human too, and sometimes that little reminder that you hesitate to send to me is exactly what I need to survive the day.
Thank you for the continued prayers. I promise, I'll keep you posted.
Tuesday, February 07, 2012
So, we're talking the strap that keeps Jenelle from sliding out of her seat belt in her chair came apart. Yes, somewhat minor, but important if you know our Jenelle. In all honesty, it didn't look like it was sewn in all that well when I got it, so it didn't surprise me.
Yesterday morning, I met with a repair guy at National Seating and Mobility. He was shocked. In all his years working with Convaid (the makers of Jenelle's wheelchair), he has never had to process a warranty repair. That says a lot for the quality of Convaid; an honestly, her last chair held up longer than we ever imagined, and it was a Convaid too! He took photos, and made a report and spoke to Convaid. It may take a few weeks, but they are going to replace the seat. Luckily, Convaid is headquartered here in Southern California, so we're hoping it won't take too long!
Her bus driver suggested taking it to a shoe repair, because really all it needs is for the abductor strap to be "re-sewn" into her seat. Not a bad suggestion, but of course, that would void the warranty. We'll just stick with Convaid.
Keep up the positive thoughts that we get a repair soon!
Monday, January 30, 2012
Jenelle had her first seizure of the year on January 14, and another seizure last Tuesday, the 24th. That seizure happened at the end of the school day in her class room. A grand mal lasting 2 minutes, 40 seconds. No need for Diastat, and she slept most of the evening. Hoping this doesn't start a trend.
Jenelle has a new one on one aide at her YMCA after-school program. Last Friday, her former one on one aide came to visit and she was just ecstatic to see her. I love it when Jenelle shows familiarity with people. On Saturday, she and I attended her "year end" party for the Tustin Cobra Challenger Cheer girls. She was just thrilled to see the girls again, and it was fun to watch them do their hair, do their nails and dance to fun music. The cheer leading was such a fantastic experience, and we can't wait to do it again next year!
I'm doing well so far on my new diet to help me lower the triglycerides and lose some weight. The first week was pretty tough; I had headaches I think from sugar withdrawals. However, in that first week, I also lost 3.2 pounds! The second week was much better. The headaches were gone, and I felt like I was fuller at meals, and had more energy. Isn't is amazing that what we eat can affect us so much. The second week I gained back a few ounces, and added some more exercises. Starting into my third week now and I am maintaining a total loss of 2.3 pounds. Pretty good so far, even though I cheated a bit this weekend and ate some candy from the pinata at a birthday party this weekend. :(
That is all for now - we are getting pretty busy with baseball tournaments the next three weeks, and gearing up for Little League. It's beginning to look a lot like Spring! Thanks for continued thoughts and prayers. I'll keep you posted.
Wednesday, January 18, 2012
At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.
Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.
Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.
I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?
It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.
So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.
Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.
Monday, January 16, 2012
Friday, January 13, 2012
First, a report on our little girl:
I type this very, very hesitantly... and am knocking on all wood products I can find ... but I'm pleased to say that Jenelle has not had a seizure since Christmas morning LAST YEAR! Hopefully this is the year we can officially say Jenelle's new year's resolution is to quit having seizures. We can only hope!
Now, it's all about Mommy! I have a few things to report and had a follow up yesterday at UCLA. The good news, as always, I'm still cancer free! Now, the not so fun news... at least not so fun for me.
At the end of December, I saw my general doctor. Because I've been off chemo since August, it was a good time to re-do some routine labs to check my thyroid function, cholesterol levels, etc. We had done this back in June, but because of the chemo drugs, the numbers were quite skewed. So, during the week after Christmas, I had some fasting blood work done and the results were not so fun; apparently my triglycerides are very, very high. My general doctor told me to lay off the carbs and exercise and we'd re-test in 3 months. I took the labs to UCLA yesterday, and they suggested I start medication right away.
If you've known me since at least high school, you will also know that I've never, ever had to diet in my life. I've always had a very high metabolism, and I've always been very thin. Oh yeah, and the exercise part... well I don't get much exercise aside from taking the stairs in the parking garage at work.
My Father has Type Two Diabetes, so I've been worried for a while that I might follow that path. It doesn't help that I love carbs and sugary sweets. However, since my cancer, I have steadily gained weight. Some survivors tell me this is the little know secret they don't tell you about chemo and cancer - that ultimately you gain weight. However, everything I've done hasn't been helping, but I'm tired of see the number on the scale that I saw when I was pregnant with Jack! The signs are all there.
Getting old totally sucks! So does going through cancer.
However, in the last 10 years, I've gained a lot of perspective about taking medications. If your child has seizures - take medication. If your child has ADHD - take medication when necessary (i.e. during school.) If you have cancer - definitely take the medication. If you think you are getting sick - hold off on medication until it's an infection - then take the medication. With all my body has been through and all that I've survived, why just agree to simply "take a pill" when I could try to make a decent effort to change my habits? I really sort of owe it to myself, and my body since I do have this second chance at life thing going for me.
I did a lot of reading and Internet research, and learned that my diet will drastically change. Leaner meats, more fish, no sugars, limited alcohol, lots of greens, whole grains and no carbs. Thank God we have a Trader Joe's just around the corner! I started this new diet on Wednesday, and I still get temped to cheat - especially the sugar (like Sweet Tarts and such.) But I think at the very least before surrendering to medication, I owe this to myself. It's worth a try, so wish me luck!
Thank you all for the continued thoughts, support and prayers. We'll keep you posted!
(Knock Knock Knock on wood!) ;)
Friday, January 06, 2012
- Attempt something new each month
- Be more punctual (so far, so good, but this one will fade fast I'm sure)
- Better Proof-reading of drafts (per my boss's request - this one will take for sure! ;)
- Strive for healthier habits and more exercise
Not much, but just some things to strive for to better myself. As for the proof reading, that has always been difficult for me. I'd like to blame it on some sort of disability that makes it impossible for my eye to see errors, but alas the real problem is that I'm convinced that I'm perfect the first time. And sometimes I'm just so busy, I just want to get one thing off my desk so I can start another. And sometimes I just lazy.
Jack announced this morning that he has decided on a Resolution for 2012. He is going to brush his teeth every day! This has been problematic for him since the broken tooth the Saturday after Thanksgiving. Yesterday, the oral surgeon removed JD's brace holding in his broken tooth. The front tooth is dead, and will require root canal, but the other is fine, so no extraction or bridge. Great news. I told Jack that another "Resolution" he could make would be to not throw the Playstation and Wii remotes. Here's hoping he keeps both Resolutions. As for Brett simply wants to be able to say on December 31, 2012 that "This year could not have been better!" And of course, Jenelle wants "no seizures". So far, so good (knock wood!)
Brett jokes all the time that he should have put a trade mark on the term KCA. Cancer really sucks, and it hits so close to home for me whenever I hear about it. While we all have a good laugh in "Kicking Cancer's Ass", at times it has not been something I want to tell a young child. Sometimes I say KCB, for "Kick Cancer's Butt!", but for me, KCA is the only mantra.
In September, I learned about a 12 year old girl in my area fighting brain cancer. Reading her updates on Facebook always made me smile because I could see that she had the right attitude to beat it. Her motto - NEGU, or "Never Ever Give Up!" Jessie Rees died yesterday after her long fight to "never ever give up" fighting brain cancer. She was a joy and inspiration to so many, and before the day ended she finally met her goal of getting 50,000 Facebook fans. God Bless you Jessie, and thank you for inspiring other children fighting cancer.
Finally, some photos from Christmas Eve that I promised: