No Photos Please...

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!

All Go for Onfi!

Sometimes it takes leaving a message where you threaten to page the doctor "911" to get things done.  Well, sort of...After more than two weeks with no communication between UCLA and our pharmacy to get the authorization needed for Onfi (Clobazam), I left a message on the "UCLA system" last Thursday stating that if they couldn't get it done, I would be paging the Doctor to have him get it done.  Because seriously, two weeks of continued seizures without being able to start a new medication simply because it needs authorization should be considered an emergency!

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!

Waiting... on insurance

Just a quick update.  Jenelle has not started the new medication yet.  We are waiting for "insurance approval" but should get approved soon.  Given this new drug wasn't FDA approved until this year, this delay wasn't too surprising.

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.

New Meds and New Problems

Did I really not update at all in June?  I was planning to share the photos of the end of school for the kids, but I guess it slipped my mind.  June didn't go by fast enough as Jenelle's seizures seemed to get worse as each day went by.  Today we met with Dr. Shields and finally we got a new plan, a new prescription and an answer to a new problem.

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!

She's getting so big, so fast!

One word to describe Jenelle these past few months = Amazing.  A few weeks ago, I picked her up from Aunt Nicki's after a meeting and she was asleep on the floor.  As I looked down at her, instead of seeing the little girl I'm used to seeing, I couldn't believe how big she looked.  And before I could say it, Aunt Nicki said, "Gosh doesn't she look grown up like that?"  Now more than ever in her life, I want to make time stand still so I can soak up ever bit of her amazing transformation.

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.

Happy Mother's Day!

I've never been one to expect lavish gifts and special treatment on Mother's Day.  I much prefer the hand made gifts the kids did at school, with sweet sentiments and spending the day with loved ones doing what we love.  I'm sick as a dog this year, so this year I will be resting at home while Brett and Jack play in the Little League 50/70 game at 2:00 p.m.  After, we're going to my in-laws to celebrate my Mother in Law's recent birthday, and of course, Mother's Day. 

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.

The Special Mom by Erma Bombeck, 1980

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."

It always gets a little worse before it gets better...

Thank you for your patience, your concern and as always your prayers in regards to my last post. If there is anything important that I have learned in life thus far, it is to talk truthfully about your feelings; especially with the ones you love and the ones who offer their support. After that last post, there has been a lot of things I wanted to update about; but in all honesty I did not have the energy to write about it. In my head, I've composed so many posts - posts about my Mom's 80th birthday celebration. Posts about Jack and Jenelle and how they are just growing up so fast. A post with photos from Easter. I'll catch up eventually, and I have lots of photos to share, but right now I'm taking it slow. I'm still trying to find myself mentally I suppose.  When I get there, you'll know.  But sometimes it has to get a little worse before it gets better.

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!