Girls day at UCLA

Jenelle and I spent the day together yesterday seeing our specialists at UCLA. It was literally a miracle to get both appointments scheduled for the same day. Thankfully, we were able to get up there and back without any major delays.



Jenelle had her appointment first with Dr. Shields. Of course, we had lots to discuss with her two recent trips to the ER for seizures. Last week, another Mom from my epilepsy support group e-mailed everyone to report that her daughter (who has LGS and is similar in age to Jenelle) had a follow up at UCLA and they thought she might be having infantile spasms again. I thought this update was interesting, because Jenelle's seizures last Saturday reminded me of the seizures she had when she was having infantile spasms more than 6 years ago.



Infantile spasms is a very severe form of epilepsy that needs to be treated quickly. It usually occurs in infants, ages 6 months to 2 years. If you recall, Jenelle was first diagnosed with infantile spasms at age 10 months. She was having over 300+ seizures a day. We first tried a steroid treatment ACTH, but ultimately used the drug Vigabatrin (obtained from Canada because it was not FDA approved) to help her spasms go away. If untreated, infantile spasms can cause brain damage, and further regression in development.



I was so thankful this Mom had sent the timely update, because I thought it was impossible to have infantile spasms again, until I asked Dr. Shields if it was possible. He said it is possible to have "epileptic spasms" and he wants a 24 hour video EEG to see if Jenelle's brain waves demonstrate the typical hypsarythmia pattern associated with infantile spasms/epileptic spasms has returned. If it has, Jenelle will have to go back on Vigabatrin. The good news in that is that Vigabatrin is now FDA approved, and we can get it here without the trouble of ordering it from Canada and paying for it out of pocket.



If the EEG does not confirm epileptic spasms, Dr. Shields wants to add a new drug to Jenelle's anti-seizure medications called Vimpat. Jenelle is already at the maximum dose of Felbatol, so he thinks its a good idea to add on another drug that we may be able to switch to completely. Either way, Jenelle is having more seizures so we need to figure out what is going on and made a decision on the best course of action. This will be a slow process as we need to do one thing at a time. First we need to determine if Jenelle is having spasms again. The Video EEG will hopefully give us some answers.

As always, Dr. Shields was very happy to see Jenelle's progress. She was in an excellent mood and was very happy. He was so pleased to see her act so different.



After seeing Dr. Shields, I had a follow up with Dr. Territo. All of my blood levels and counts are good and things remain good for me. This month will be one year since my awful reaction to my last dose of IV Chemo - or as I told Dr. Territo, one year since I almost died! She was also excited that in August, it will be one year on maintenance chemo, with one year down and one to go!



This weekend, Brett and I hosted the semi-annual Texas Hold'em Poker Tournament at our home and raised $515 for the Leukemia Lymphoma Society to help support Brett's cousin Bridget participate in the Team In Training Rock N Roll Marathon in San Diego! Good luck Bridget! If you would like to make a donation for Bridget, please check out her donation page by clicking here.



That is all for now. Thanks for the continued thoughts and prayers. I'll keep you posted!

Quality Time with JD & The Batting Stance Guy

Last Thursday after baseball practice, I took Jack (JD) and two friends Isaiah and Grant to a book signing at Barnes N Nobel in Huntington Beach. The You Tube celebrity Gar Ryness aka "The Batting Stance Guy" has just published a book about the talent he describes as "the least marketable skill in America." He imitates MLB ball player batting stances. And he's pretty hysterical. The book is called "The Batting Stance Guy: A Love Letter to Baseball" and can be purchased everywhere.

I feel like I've known BSG for a long time now. I've been following him for over a year when he first started posting videos on You Tube. After his videos first came out, I started e-mailing him to harass him into imitating the Angels; specifically players like Jim Edmonds, Chili Davis, JT Snow and Vlad Guerrero. I was always impressed because he always replied to my e-mail. The day before the book signing event in Huntington Beach, BSG posted on my Facebook page that he hoped to see me there. To my surprise, when we walked up to get our books autographed, he recognized me. The boys were totally impressed and had a blast. I think the Batting Stance Guy enjoyed having them ask him all sorts of questions as well. It was a total "win win."

Here are some photos from our fun evening.

Jack, Me, The Batting Stance Guy, Isaiah and Grant

Jack learning to imitate Gary Sheffield.



The Batting Stance Guy autographing JD's wiffle ball bat. Notice the news crew from Japan in the background? The boys thought it was fantastic that they were going to be on TV, until they learned it was going to air in Japan!

Here is a video of their Q & A:

All clear!

Quickly - I just got back from the pulmonologist and I have the "all clear" on my CT Scan and PFT test. He believes what they are seeing is just chemo scar tissue. Thank you for the thoughts and prayers. I have some updating to do, but I'm off to watch Jack's last Little League game of the season! Go Cardinals!

Another Ambulance Ride!

Our weekend was not short of drama unfortunately. Miss Jenelle had some pretty bad seizures at the baseball field on Saturday and had to be transported by ambulance to the ER, where she was released two hours later. We don't know what brought them on, but the ER took a urine sample to make sure her UTI from two weeks ago was gone.

She had been acting fine in the morning on Saturday, and even participated in her Challenger game. She was happy during the game, but had been pretty cranky Friday evening, and shortly after the game. We couldn't quite figure out the crankiness, other than thinking she was hungry. Jack had a baseball game about an hour and a half after Jenelle's so she and I had waited for it to start hanging around the snack bar. Saturday was pretty warm.

Jack's game started around 11:30. I was supposed to keep score, but another parent who thought she had a commitment was able to take over for me. This turned out to be a good thing since I was able to be with Grandma and Grandpa when Jenelle started having seizures during the game. Coincidentally, Brett (who manages Jack's team) was watching the game from his car on a side street due to his being "suspended" from managing this game. That's another story in itself, but turned out to be a fortunate twist as he was able to go to the ER with Jenelle and me.

During the 3rd inning, I was helping the coaches with pitch count, and was near the score keeping booth. When the inning ended, I went back to sit with Grandma, Grandpa and Jenelle. Grandma motioned for me to be quiet because Jenelle had "fallen asleep." Jenelle was lying on the ground behind our chairs. Five or ten minute later, I noticed Jenelle moving as if she was trying to wake. I looked behind my chair to check on her and realized she was seizing. Grandma and I quickly got her comfortable and started to time the seizure. When she approached the 5 minute mark, Grandma told me to give her Diastat.

In my mind, I was hoping she would just come around again because I didn't want the distraction of calling 911 for Jack's team and because Brett wasn't allowed on the field. But when I realized that her seizure wasn't stopping, and that she could have been seizing when Grandma thought she was asleep, I figured it was better to be safe than sorry. When Jenelle had Diastat two weeks ago, her heart rate dropped as did her oxygen intake. Being in the middle of school grounds so far away from my car and home, it was a good decision. We gave Jenelle Diastat, and called 911.

Brett was able to open the gate and flag the ambulance onto the field so they could get to Jenelle. She was still non-responsive so they put her on oxygen. We decided that Brett should go in the ambulance with Jenelle to the ER, and I followed in my car. As it turned out, I beat the ambulance to the ER. Brett said her heart rate was very low and the ambulance actually used lights and sirens to get there (to my credit, I left before they were off the field.) I felt horrible for Jack as he was still playing his game, and could only watch. He's been so used to this in his lifetime that he handled it well. Grandma and Grandpa stayed behind to be with him.

At the ER they took blood and inserted an IV. Before they could get her on fluids, Jenelle started to wake and was pretty cranky. Because of her UTI two weeks ago, they took urine to get a culture and we should know the results tomorrow. Because she had no other signs of illness (fever, etc.) they didn't feel a need to run blood work. After an hour and a half, we were released. Jenelle has been sleepy and cranky ever since, but is doing fine.

We see Dr. Shields a week from Monday, so we have a lot of questions for him. We've had a wonderful and restful Sunday. The kids gave me some wonderful handmade gifts and we had a wonderful brunch with our family this morning.

Sadly, on Saturday evening we learned the news that our little league friend who had leukemia (I mentioned him earlier in the season) passed away around the same time Jenelle was transported to the ER. We are keeping the Abbey family in our thoughts and prayers. It has been a tough weekend for our Little League family, but we are so appreciative of all the love and support from everyone. Thanks again for the thoughts and prayers. I'll keep you posted.

The Special Mom, by Erma Bombeck

Well, this weekend is Mother's Day and I haven't shared this one in a few years, so I thought I'd post it again. I want to share with you my favorite Erma Bombeck writing about "special" Moms in honor of Mother's Day.

I must note that I disagree with Erma on one part of this piece - we (special needs moms) are not saints, we are just doing what any parent would do. For the most part, Erma has perfectly described all that God has shown me in my very special daughter. Enjoy and Happy Mother's Day!

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."


*Re-reading this again brought tears to my eyes. It took 6 years for Jenelle to finally say "Momma" for the first time, and I had to hear it on the telephone while in a hospital bed when I was hitting the worst of induction chemo. And even in the most difficult of times for me, I understood the silver lining God had planned. My absence from home gave Jenelle the strength to find her voice and speak my name. That tiny miracle helped me get through my cancer. God truly does work in mysterious ways.

Another test this Friday

Just wanted to check in briefly since so many of you have been asking about the results of my CT scan last Friday. The answer is I don't know yet. I called my pulmonologist this morning and his nurse would not give me anything over the phone (which is pretty standard HIPPA practice these days). She told me that Dr. Ross wanted me to have a Pulmonary Function Test in addition to the CT scan, and that after I've done that, he will go over the results of both with me. She also reassured me that if the CT had showed something urgent, he would have had her call me in sooner, so that is a relief.

My PFT test is scheduled for Friday at 7:15 am. I'm sleepy just thinking about it.

Jenelle is doing great. We had to take her wheelchair in this morning for some much needed repair. I spoke to her teacher and the bus company, and they think we might be able to try out a "harness" system for Jenelle to use to ride on the bus. Jenelle's walking has really improved, and she is managing stairs very well with little assistance. The "harness" is like a 5 point strap vest that can be used to secure Jenelle into a regular bus seat without the need for her wheelchair! Of course, we'd keep her chair close at hand, but it would be nice not to have to set it up every morning to get her loaded on the bus. We'll discuss the "harness" at her next IEP in September.

Jack has been doing great. I can't believe the end of school and the end of the regular Little League season are coming in the next few weeks. Jack's team is doing well, and he has become a very good pitcher. A chip off the old block. Brett is as busy as ever and currently at a Little League Board Meeting as I type. I always wonder, which last longer, the meeting, or the "after meetings?" ;)

Finally, I am sorry I didn't share the story of the photo below. Every year, our league has a professional photographer come to the games to take professional sports photos of the kids. Over the years, I've gotten to know him and he really does enjoy his work. Each year that he has photographed the Challengers, he gives all of the photos to the parents for free.

The photo below was an absolute candid moment. The photographer, Lou Sautrich, was taking photos from the out field with his telephoto lens. I was sitting on that bucket writing names of the kids on the raffle tickets in my hand - the team was raffling off tickets to that night's Angels game, and I wanted to make sure I counted each kid as they came to bat. Jenelle had just crossed home plate with her buddy, saw me sitting on the bucket and walked over to me to lean in for a hug. It was amazing. She saw me, recognized me, and came over to me as if to say, "This is my Mommy!" Although it appears that I'm looking straight at the camera, I didn't know he captured this moment until I saw it in the photo binder. It is my absolute new favorite photo. The love and joy captured in that photo just says it all. Thank you Lou!

That is all for now - I'll keep you posted.