Friday, December 26, 2008

Jenelle lost her 1st Tooth!

Jenelle lost her first tooth today! A couple of days ago, I noticed it was loose, and Grandma got to pull it this morning while we were at my follow up appointment. I guess we'll be getting a visit from the Tooth Fairy tonight! Here is a photo of the missing tooth - looks like the new one is coming in.

We had a wonderful, low key Christmas. I sat up and watched gifts in the morning, and rested for most of the afternoon. Our neighbor made us dinner last night as Grandma and Grandpa took Jack to Christmas dinner with the family. Here we are, the bald family, on Christmas Eve.

I had my first follow up appointment today, and my blood work was so good I didn't need blood or platelets! It looks like I might be staying home for two more weeks before starting the second round of Chemo. We met with the nurse practitioner instead of the doctor today, and that information was a little contradictory, so we aren't holding our breath, but I might have more time at home that originally thought.

The nurse told me to get out more and to get more exercise. I have been having some sciatic pain so I need to work that out a bit. This afternoon I went out to lunch for the first time and it was nice to be out. Slow and steady on the road to recovery. Thanks for the continued prayers.

Tuesday, December 23, 2008

Mommy is HOME!

I was released on Monday, and am home resting. It is nice to be in my own bed. I can't believe how wiped out I am by this experience. It really takes a toll on the body. Please keep me in your prayers. I go back for round 2 in early January.

Jack was happy to have me home. When I suggested pizza for dinner, he thought it was too unhealthy for me! Sweet child.

Merry Christmas to you and your loved ones.

Sunday, December 21, 2008

Please use this e-mail

Our home computer has crashed twice, so I haven't had access to that e-mail for two months. Sorry for the inconvenience, I will change it on the side bar.

Saturday, December 20, 2008

Paging Dr. House...

After 5 days of fever and rash the doctors still aren't sure why Kelly has a rash and fever. They think it was an allergic reaction to the antibiotics. They stopped almost all of the drugs, but she still has a fever. In a four hour period Kelly can have a normal temp, start shaking because she is freezing, to a fever over 102, back down to normal. Kelly and I have been pretty frustrated by the answer from the doctor of "we will stay the course and ride this out". I have never heard Dr. House say that. Not much we can do. The rash is getting much better with the fever still hanging around. Kelly could have been home by now if it weren't for the darn fever. She got blood and platelets today to get her numbers back up. They now think she might go home Monday or Tuesday at the earliest. We really want to go home. Thanks for all the prayers.

Wednesday, December 17, 2008

Family united in baldness...

Jenelle's daddy #2. We are on day 22 of KCA(kicking cancers ass). After I told Jack mommy cut off all her hair he said we should do the same. He said we can be "the bald family". We have some good news. Kelly is doing really well. Her blood levels have increased to the point she can go home. The problem is she has a fever and rash that won't go away. Kind of like that relative during the Holidays. The rash covers her entire body and itches constantly. She is having a bone marrow test tomorrow. The Dr. expects the leukemia to be either in remission or close to it. We still have to do a second round of chemo either way. Jenelle cried the entire weekend. You think it was because she didn't poop for three days? We need everyone to start praying for Kelly's fever and rash to go away so she can get home. I am very proud of Kelly and how great her attitude has been. She is amazing. Kelly has approved this message.

Sunday, December 14, 2008

Asking for prayers when Benadryl won't work!

It's been tough. I finished the first round of Chemo a week ago, and day 6 and 7 were beyond tough. Let's just say I didn't eat, but was running to the bathroom with the runs and to vomit... At the same time. I've had days where I slept all day.

Right now is my toughest challenge, I am currently experiencing a full body rash from the chemo and a reaction to Vancomycin. The old Lamaze breathing techniques have been helpful. Today was the absolute worst, and I would but the itching and burning at a 10 on the pain scale. If you want to pray specifically, please pray this rash resolves soon as Benadryl and Hydrocortosone barely touch it. I can't take much more of this torture.

I started slowly losing hair yesterday in big clumps. After washing my hair today, and then brushing it out, I had a hair ball about 15 inches wide! My Mom is staying with me right now, and we decided to cut it all off tomorrow. Mom is going to the wig shop first to buy me some scarves and a night cap cause I hear it can get cold at night when you are bald.

Once everything resolves, I can go home until my second round of Chemo in January. I'm still positive I'll beat this, and I like to think that next round, I'll know more what to expect, so we can combat things sooner!

Thanks for the prayers, and please keep them coming.

Friday, December 12, 2008

Why I feel so safe here at UCLA

Bullet points, because my typing on the lap top sucks. Chemo brain already?

  • Brett and I met at UCLA at a sushi bar in Westwood called Cowboy Sushi back in 1991. And those of you who know Brett, knows he doesn't like sushi - must have been the sake.
  • My room is 6111 and "11" is my lucky number
  • On the other side of my "peeps" here at Oncology, is the Neuroscience ward. We all know how I love my Neuros at UCLA! I just feel like this is one big home for me.
  • I get to walk past the Video EEG monitoring room every day on my daily walks. I love looking in, and thinking to myself, "I know what that is!" and thinking seizures suck.
  • The Neuroscience ward looks over Fraternity Row; specifically the Theta Chi house and the Sigma Alpha Epsilon house. I was a "Little Sister of Minerva" at the SAE house at UCSB. In fact, I partied at that particular SAE house back in 1991 - possibly the same weekend I met Brett.
  • The SAE house has beautiful white Christmas lights everywhere and looks gorgeous. They had a beautiful tree as well, but it was gone tonight. Hmmm... maybe a huge party?
  • Part of my unit looks out of Dr. Shields' clinic.
  • I can see Westwood from the hall, and last night they had the premiere for "Marley and Me" with Jennifer Aniston and Owen Wilson. Guess they were too busy to stop by.

Sleep, it haunts me.

I can attest, that you can have some super trippy dreams on Chemo. Some are very detailed, and all have to do with food. Like me eating something I can't have right now (steak, etc.) I can even have a most vivid dream, in like 10 minutes. Last night was not a good night for sleep. I saw every hour on the clock last night, and finally got two hours between 4 and 6 a.m. Part of it was my being so sleepy the day before, which I later figured out to be 3 doses of Benadryl for a rash I had. I took 3 doses of Benadryl, an Ambien.... yeah, I slept a lot yesterday and was hung over too. So I did not take the Ambien last night and look what happened.

I'm too tired to tell you about the dreams. Sorry. Trippy. But know, that sleep haunts me!

Wednesday, December 10, 2008

Daddy's first blog

Jenelle's daddy here. Kelly is feeling better today and I am taking full credit for it. She told the Dr. I was the best medicine. Who am I to argue with her. Kelly's energy is up, her appetite is better. She took a walk today for the first in three days. She was even frisky enough to shake her naked booty at me. Followed by "you can look, but can't touch." Such a tease. I brought all the Christmas cards up for her to open, which she really enjoyed. She is starting to understand how much she is really loved. Your prayers, comments, and cards are really helping her keep her spirits up. Monday night I called Kelly to let her know I heard Jenelle say "mom, mom, mom". Instead of the usual mum, mum. I called Kelly to let her know and Jenelle did it again and Kelly got to hear it. It was beautiful to hear. I personally want to thank everyone that has been so wonderful to us. You have been amazing. We will continue to fight this cancer and kick it's ass to the curb. Kelly has approved this message.

Tuesday, December 09, 2008

Please no calls and visitors

I finished Chemo on Sunday and am really hitting the low part of this. I'm getting lots of phone calls with people wanting to visit. Please, no calls or visitors this week. I'll let you know when I turn the corner. Thanks!

Saturday, December 06, 2008

Moving a hospital

This link is to a video on You Tube of how UCLA Moved hospitals from the old one to the new one where I'm staying. It's fun to watch - enjoy!

Thursday, December 04, 2008


My Mother in Law e-mailed this photo of Jack last night shortly before their Christmas program. I am the "Prayer Friend" for his class - Jack looks proud.

Our daycare provider sent this to me of Jenelle being happy the other day. I think she looks like my cousin Meghan in this photo.

Wednesday, December 03, 2008

Falling Stars

The doctors here want me to take walks around the hospital as much as possible. All of the rooms here are their own isolation, so everyone always has a door closed. All occupied rooms have the patients first name, and some have little signs, etc. Mom and I noticed that a few rooms had "shooting stars" on the out side of the door. We weren't sure what it meant, so we asked.

A nurse told me that it was a "Falling Star" and it meant the patient was a fall risk or has already fallen (i.e. out of bed, on the floor.) Mom didn't quite understand that at first, and thought it meant the patient had "died." Needless to say, on our walks she would get emotional and she wasn't too impressed with all the "Fallen Stars" on my unit. Once I realized her mistake, we had a good laugh.

I slept a lot today and some emotions are setting in. Some nausea as well. Brett is doing well and the help has been amazing - thank you all. Thought you'd get a kick out of my funny "falling star" story. Gotta keep the sense of humor!

Tuesday, December 02, 2008

Blood & Platelet Donations Needed

I am some what embarrassed to say, that in my 38 years of life I have never donated blood. When I was young I had the excuse that I was too thin, but even as I put on weight with age, I never got around to doing something so simple, and so life saving. And now here I am with a specific type of cancer that requires lots of transfusions, platelets and other blood products. So far I've had 4 units of blood, 3 units of platelets and 3 units of other blood products. I haven't even been here a week.

We've gotten a lot of requests on blood donor information, so here you go. My blood type is A Positive. I need both type specific blood and platelets. If you are in the area, and would like to specifically donate blood for my use, you can only do so at UCLA. If you want to donate blood at your local red cross, you can ask that it be credited to me (it does not have to be the same type.)

The UCLA Blood and Platelet Center is located at 1045 Gayley Avenue in Los Angeles. To make an appointment, call 310-206-6287 or 310-825-0888 x2. Their website is

Here is the criteria for giving blood:

  • Be at least 17 years old (there is no upper age limit)
  • Weigh at least 110 lbs.
  • Be in general good health
  • Have not taken any aspirin or anti-inflammatory medications withing 36 hours of donation
  • If Diabetic: No Insulin (oral medications are acceptable)
  • If asthmatic: No oral medications (Singulair is acceptable)
  • Must be willing to allow approximately 2 hours for the entire donation process.

If you have any questions, call your local Red Cross or the UCLA number above. Thank you so much.

Monday, December 01, 2008

Visiting with the kids

My in-laws brought Jack and Jenelle to visit me last Saturday. The photo above is me and Jack in my new home. On Thanksgiving, we paged Jack's child psychologist and asked how to handle telling him the news. He suggested to be simple, and honest and not to dwell. When I saw Jack on Saturday, I told him "Mommy has Cancer, so I need to be in the hospital so they can make me well." I didn't want to overwhelm him with words like Leukemia. I figure with a word as simple as Cancer, he at least knows what to say to his friends. I also told Jack that I will likely lose my hair. When I suggested that he come help me shave my head when it starts to fall out, he really liked that idea. He has been doing well with the news, but has moments where he misses me.

Jenelle has been amazing, so I'm told. We had some issue with her feedings. I usually make Jenelle's pureed food once a week for the week. Obviously, I'm not there to make it and she ran out. There is only so much oatmeal a person can have before getting constipated, and that is what happened to Jenelle. Poor thing. My boss (who is on maternity leave with her one month old) took on the job of making some pureed foods for Jenelle and had them delivered to the house, so now she is back to a better diet. What wonderful support we have around us. One very sweet thing I'm told is that whenever people have been talking about me in front of Jenelle, she says "Mum" a lot. I realize she can't possibly understand why I'm gone, but to know that she is vocalizing my name "mum" really tells me she misses me.

Jenelle's Neurologist Dr. Shields stopped by for a visit yesterday. It was so wonderful to see his warm smiling face. I know I'm in good hands here. I've had a lot of visitors, and I am stocked well with reading material and such. I really haven't had much time to be bored. So far so good with the treatment. Just taking it one day at a time.

Thanks for the prayers - please keep them coming!

How it all went down...

At lot of people have beein asking how it came about that I ended up getting tested for leukemia. It happend very fast really, but looking back I had some symptoms for a few months. Mny of the symptoms include fatigue, joint pain, flu like symptoms, excessive bruising and of course a low white blood cell count, which you can't tell unless you have a blood test.

Mid summer, I started to notice a lot of joint pain, especially in my hips. I remember when I drove to Visalia in September with my Mom, we made the drive without stopping, and when we got home I had horrible hip pain. That had been around for a while. Of course, I've always had fatigue, but I never really thought it was "my norm" with the kids. All summer, I had a lot of bruising on my legs and arms, and it started to get worse and more out of control in the last few weeks.

The week before Thanksgiving, I found a lump in my arm and my breast, so I made an appointment with my general doctor. She saw me Friday before Thanksgiving, and at the time I showed her my bruises. She decided to do a CBC. The next day, she called me at 7:00 a.m. and sent me to Hoag because the results indicated that I had a super low white blood cell count. At Hoag, they re-checked the labs, and found the same results. The ER doctor sent me home because they were not able to do a bone marrow biopsy, but he told me I needed one as soon as possible.

The Monday before Thanksgiving, I called my hematologist to get an appointment, and the soonest they could get me in was Wednesday. As a funny, on Tuesday the hematologist office called me and told me they wanted to post pone my appointment until after Thanksgiving. Not wanting to wait that long, I hung up on the receptionist and told her I was coming the next day. Not once, not twice but 3 times (and I usually don't do things like that!) Brett didn't want us to wait around either.

When we met my Hematologist, Dr. Quan on Wednesday, she sprung into action once she saw my labs and did the bone marrow biopsy right there in the office. They gave me a local and some Ativan, so it wasn't so bad. Dr. Quan was so adamat about getting the results before the holiday, she had a nurse drive my biopsy to the lab. After some lunch, I went home to rest. Dr. Quan called Brett's cell around 5:00 with the results. He was driving home from picking up Jenelle from daycare, and she told him to pull over. While I hate that he heard the news by himself, I'm glad he was able to break the news to me.

On Wednesday night, we went from our home to admit me at Hoag. At that time, we didn't know the specific type of Leukemia, and wouldn't know until the next day. Either way, treatment was going to be the same, so Hoag did their best to prepare me for Chemo. Once we determined the sub-type, Hoag transferred me to UCLA ASAP, and you know the rest.

From the moment I was hospitalized, I started "pre-chemo" with a drug called Atra and once at UCLA a Vitamin A regime. The sub-type Leukemia I has responds well to both. I've learned that with Leukemia, there is no catching it early or late, it just seems to come on with a vengence. Of course, because this is a blood cancer, I have been given transfusions, platelets and something called cryopecipatate. All are blood products. I have been having problems with too few platelets, and clotting in the wrong places (DIC). This is just something they expect to see and wil manage carefully.

When I have more information, I will post about donating blood. I cannot have flowers or food because of the bacteria involved. They call it Neutropenic. Again, this hospital is absolutely wonderful, and I am at such peace being here.

Thanks again for the thoughts and prayers. Please keep them coming!

Friday, November 28, 2008

Humor in the sorrow

Understandably, I have had lots of emotions in the last two days. Moments of tears, moments of fear, moments of anxiety (which Ativan is the perfect cure) and laughter. Each time we meet a new nurse, I introduce myself and Brett, and tell her we are all about being positive, with some smart ass sass. Everyone has been wonderful here.

I have this large IV poll next to my bed, and sometimes have three lines going into my central line. Earlier tonight I told Brett, "I was thinking about getting a pole (i.e. stripper pole) in our bedroom, but this is not what I had in mind!" Brett has been wonderful, and he has not left my side. He told me it is worse for him when he's alone because he can't handle his emotions. My parents arrived this afternoon, and Brett will stay here through Sunday, and Mom will start staying with me on Sunday night. That is the plan for now.

I had the absolute best ambulance ride up the 405 to UCLA around 3pm on Thanksgiving. My transport guys were wonderful; a really tall black guy who played basketball at Kansas was my driver, and a really large guy sat next to me in the back cracking jokes as we people watched in traffic. The two had never transported anyone to UCLA, and with the hospital being new, we got lost on the way. My doctor at Hoag said I had to be in my bed at UCLA by 5pm, or I would not get to start my chemo. We left at 3:30 and hit traffic, but these two knights were determined to get me in bed by 5:00.

We hit bumper to bumper traffic at LAX, and they were told not to use the sirens. As we inched close to the Wilshire exit, my driver said, "We have 15 minutes, I'm going Code 3" - next thing I knew, sirens were blaring and we were running lights and driving down the wrong side of Wilshire. Because these guys didn't know where the "new" hospital ER was, they turned on Le Conte to drive past the old one. At this point we realized we were lost. We drove up Hilgard, past the Tri Delta house and sorority row, then took a small road down the center of campus. Still not sign of the ER. And of course, it being Thanksgiving, the campus was deserted. When we did find a lone man walking down the road, the drive tooted the sirens and yelled, "Where's the ER?" Startled and possibly in need of new underwear, the guy pointed up the street and off we went.

When they got me to my floor, they took me to my new room. Wouldn't you know it, the floor had just been waxed, so they had to find a new room. These guys were adamant about getting me in bed by 5pm. I overheard the nurse say, "Room 11 is open", so I looked at my guys and said, "11 is my lucky number!" My driver shouted, "This woman needs room 11 right now!" and they swiftly carried me to my new home. When I transferred myself onto the bed, the three of us looked at the clock - 4:59 p.m.

High fives and fist bumps went around the room, and my paramedic knights bid me good luck and farewell. So, my entrance to UCLA had flare no doubt. And we were laughing all the way.

I miss the kids, especially Jenelle. They have been staying with Brett's parents. Tonight, I spoke to Jenelle, and Grandma said she gave me the biggest smile. Brett's parents are bringing them tomorrow for a brief visit. I am looking forward to it. Jack misses me, but knows I am sick. He will be OK.

Update on Mommy

The night before Thanksgiving, 2008 I was diagnosed with Leukemia and admitted to our local hospital.  What you read below is the first email/post that I sent out to all of our friends and family.  During 2008 and after, this blog changed and evolved.  I kept both my cancer updates and Jenelle's seizure updates going consistently, and I hope that I've become more open with not just Jenelle's journey, but my own.  Here is that first post: 
I was diagnosed with Acute Myeloid Leukemia/Acute Promyelocytic Leukemia (AML/APL) on Wednesday. On Thanksgiving, I was transferred from Hoag Hospital to UCLA because UCLA has a more advanced form of chemotherapy in which to treat my specific type of leukemia.

I'm told that if you have to have Leukemia, the type I have is the one you want because it's the most treatable. There is a 70 to 90% success rate with UCLA's treatment. Hoag was absolutely wonderful, but I have a greater feeling of comfort being here at UCLA with the best doctors in the world. I am in the brand spanking new Ronald Reagan UCLA Medical Center hospital, and it is like being in a top notch hotel (with internet access - YAY!) I am told for this first round of chemo, I will be here for about a month. We're hoping I can get home in time for Christmas.

I started chemotherapy last night and so far so good. As you now I have a positive attitude about most things in life. I realize it's going to get tough, but it will be just a short interruption in life on the road to getting well.

I cannot have flowers or plants, but visitors are OK. Please stay away if you think you are the slightest bit ill. The hardest part will be being away from the kids, but I realize it is only temporary. We're not really sure what we need right now, and I'm sure Brett will need some help with the kids. We know from past experience that our friends and family are a wonderful support so thank you in advance. I'm only sorry that we have to lean on you all again.

I will try to post updates about me here, rather than send out e-mails. It's just easier putting it all in one place, and I'm familiar with using this format, so I'll stick with what I know to keep it simple.

Thank you for the continued thoughts and prayers. Please keep them coming.

Wednesday, November 26, 2008

Mommy needs prayers

Dear Friends and Family,

This has always been a place for Jenelle, but we just got news today that I have been diagnosed with Leukemia. I am leaving this evening for the hospital to start chemotherapy and will be there for a month.

This is going to be hard, but I will stay positive. I have a wonderful family that needs me. Please keep me in your thougths and prayers.


Thursday, November 20, 2008

Update on Jenelle's illness

Just wanted to give you a little update on our Jenelle. Since coming home Tuesday, she has still been running a low grade fever, and this morning she started vomiting. She has moments where she seems very normal for Jenelle and is bouncing around playing with toys, and moments where she is very cranky and obviously not feeling well. The good news is that her seizures are back under control, and I haven't noticed any since Tuesday morning. I've been in touch with her teacher and was told that two more classmates have gone home this week with fever of 104. That definitely makes me feel better knowing that it is a viral bug, and not some undiagnosed problem Jenelle can't tell us about. We all know how miserable it can be to be sick.

One thing I have been enjoying is the cuddling time I've had with Jenelle this week. Anyone in the family will tell you that we can always tell when Jenelle is not well because she likes to cuddle when she is sick. Along the same lines, I also have a very sweet story to share; during her illness Jenelle has really shown a preference for wanting her Mommy. The first time I noticed it was in the ER, when I got up to use the bathroom. As I sat up from the edge of her bed to leave the room, Jenelle sat up and appeared to almost reach for me. When I got back, Brett told me her eyes followed me out of the room. On Tuesday afternoon, Brett's Aunt Nicki noticed the same thing that Jenelle's eyes seemed to follow me around the room, as if she didn't want me far from her side. Jenelle has never been one to show preference for anyone, or any type of "stranger danger" when approached by new visitors. So to see her act this way is quite a special treat. And not to say she doesn't love her Daddy just as much, when Brett got home today to allow me to come to work, Jenelle stood up and walked over to him right away to give him a hug.

Hopefully we'll be rid of this bug soon, and Jenelle will be well enough for Thanksgiving. Thanks for the continued thoughts and prayers. I'll keep you posted!

Wednesday, November 19, 2008

Overnight stay at CHOC

Well, in the spirit of Epilepsy Awareness Month, Jenelle decided to give us her own personal demonstration on the dangers that viral illness can threaten the seizure threshold. Long story short, she had an over night stay on Monday at Children's Hospital Orange County for observation of uncontrolled seizures.

Last Friday, Jenelle was sent home from school with a low grade fever of 101. As a precaution we took her to the doctor so they could check the usual culprits; ears, throat, etc. She was fine and in fact giggled her way through the exam. Over the weekend her temperature was normal, and she was acting fine except on Sunday, when she started to get unusually cranky. She had no fever so we sent her to school on Monday.

In the early afternoon on Monday, Jenelle's teacher called to tell me Jenelle was having some increased seizures. We talked about timing them, and she wanted to watch her a little longer before using her Diastat. About a half an hour later, she called back to tell me her seizures were clustering too long, so they were going to give her Diastat. I told her I was on the way, and made it to her school pretty quickly. When I got there, Jenelle was sleeping (post ictal) on her side, and her skin was very mottled and blue looking. Shortly before I arrived, they took her temperature and it was 104. The teacher had Tylenol ready for me to give her (it's rather funny now to think the school could giver her Diastat, but not Tylenol) so I did. While looking at Jenelle, we noticed she had some shallow breathing, so I made the decision to call an ambulance. I had been planning to take her straight to the ER, but was not comfortable transporting her like that in my car, especially with it being the same time that school was letting out.

The Paramedics and Ambulance arrived very quickly and put Jenelle on blow by oxygen. After a couple of minutes on oxygen, she started to open her eyes and come around. At this point, her temperature was 103. In all, we believe that Jenelle was having cluster seizures and probably seized a total of 45 minutes out of an hour (in clusters, not one long seizure but rather a lot of little ones.) As some of you know, Jenelle's cousin is at CHOC in the PICU recovering from a stroke due to complications with her shunt. Ironically, one of the paramedics recognized our last name and asked if we were related. Not a good month for the Curran family to say the least.

As it turns out, the ambulance was a good idea because Monday night was the busiest night of the year at CHOC/St. Joseph ER. Even with arriving by Ambulance, it took over 6 hours to assess Jenelle's condition. They took blood and urine samples to rule out infection, and both came back normal. The doctor believes she has some sort of viral illness. We arrived at 3:30, and around 7:30 Jenelle started seizing again, this time she seized for 13 out of 15 minutes. The ER quickly gave her some Ativan and it seemed to do the trick. Around 10:00 p.m., we made the decision to admit Jenelle for observation. Immediately when we arrived, the ER asked for the number to Dr. Shields at UCLA and put in a call to him for instructions on the seizures. UCLA was in charge of everything involving neurology via phone and gave CHOC a good plan on how to treat her seizures.

We finally got to a room around midnight, and Jenelle was still awake but out of it until 2:00 a.m. Jenelle woke with a fever of 102 on Tuesday morning, and stayed asleep most of the day. I went home to shower and get Jack from school around 3:30, and by the time we got back to the hospital, Jenelle was awake, cranky and crying. Even though the crying wasn't fun, it was nice to see her be somewhat herself. While she was sleeping all the time, we still weren't comfortable that she wasn't having seizures. Once she was awake and cranky and more of herself, we felt it best to take her home.

This morning Jenelle has been awake and bouncing around as normal. She still has a low grade fever of 99, but is more hungry and much more alert. Unfortunately now our "three years since her last hospitalization" streak is over, but at least it was something very minor. As always, when kids who have seizures get sick, their seizure threshold is lowered and seizures can get out of hand very quickly. We were so impressed with the communications between CHOC and UCLA and we're glad she is home and back to some seizure stability.

Thanks for the thoughts and prayers. I'll keep you posted.

Saturday, November 08, 2008

Please say some prayers for Jenelle's cousin

Jenelle's cousin Kiersten suffers from Hydrocephalus. She is in the PICU at CHOC and has suffered some complications with a shunt revision.

Please keep her, and Brett's Brother's family in your positive thoughts and prayers.

Tuesday, November 04, 2008

For my Mom...

Mom always tells me the only way she gets to see photos of the kids is from this website. Well Mom, here you go! ;)


Monday, November 03, 2008

Infantile Spasms: A Devastating Diagnosis

This is an excellent video that shows the many differnt ways infantile spasms can appear. It also features Jenelle's neurologist, Dr. W. Donald Shields. Please take the time to watch this video, and see how suble these seizures can be.

Saturday, November 01, 2008

November is National Epilepsy Awareness Month!

November is National Epilepsy Awareness Month. People with epilepsy suffer from seizures, stigma and side effects. Parents of children with epilepsy have to endure frightening seizures, and watch as these thieves steal moments of development from their child. It is a hell no one should have to live through.

This year, I want to talk about the parents role in fighting epilepsy. Please take some time to read my previous posts about epilepsy in honor of National Epilepsy Awareness Month, particularly last year's videos.


“As parents it was very difficult emotionally to see Jake struggle with epileptic seizures. On top of that, we struggled to find the right treatment for Jake because of concerns about side effects. We knew we needed to do everything we could to find the right medical advice and a treatment that would work for Jake,” said Grunberg. “My wife and I created Hollywood’s Helping Hands because we felt compelled to raise awareness of epilepsy and help other families going through the same thing.”

~Greg Grunberg, actor

These words from actor Greg Grunberg, who is also a parent familiar with epilepsy, ring true to me. Epilepsy is a frightening, emotional, never ending struggle. Parents go through a range of emotions starting with doubt. "Did my child just have a seizure?", "What if the doctor thinks I'm over-reacting?", "What do we do next if this drug fails?", "What have these seizures taken from my child developmentally?", "Will there ever be a day that I don't think of seizures?"

For young infants and children with epilepsy, the parents are their only warriors. Sometimes the parents need to face their own fears in order to help their child. If you lose the parent, you lose the child. Epilepsy plays hard, and often learning about it is a trial by fire. Every moment lost to seizures, is a moment lost in development. There is no time for fear.

When most people think of epilepsy or seizures, they think of "tonic/clonic seizures" aka "generalized seizures" aka "grand mal seizures." These are the scary ones. Where the child is convulsing, shaking and often screaming or making strange sounds uncontrollably. Witnessing this type of seizure is truly frightening. Unfortunately, most of the general public feel that this is the only type of seizure. I myself thought that long ago when our good friend first suggested Jenelle was having seizures. I would know when I see it, right? Not necessarily.

It usually takes a long time for most individuals and even some doctors to learn to recognize the other seizure types. I am always more than happy to let a nurse or doctor know when Jenelle is having a seizure. And many times, that doctor or nurse will admit they had never seen that type of seizure in person. These difficult to recognize seizures are the most damaging. Especially if a parent is frightened by the stigma of epilepsy, and in deep denial.

There are many seizure types. Some that are subtle and some that are quite obvious. Our Jenelle has had each and every type of seizure there is. From the stares to the convulsions. It took me a long time to recognize the subtle ones. And looking back at her older EEG videos that I am preparing to upload, I see now how they were so obvious. Sadly, some parents are so fearful of the scary seizures, they don't want to acknowledge the possibility of other seizure types. These subtle seizures are silent thieves, stealing precious moments of development. We can't let our fear, and the stigma of epilepsy keep us from fighting for our children, like Greg Grunberg, and us.

Briefly, let's look at the Statistics:

300,000 people have a first convulsion each year.

120,000 of them are under the age of 18.

Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

200,000 new cases of epilepsy are diagnosed each year.

Incidence is highest under the age of 2 and over 65.

45,000 children under the age of 15 develop epilepsy each year.

50 percent of people with new cases of epilepsy will have generalized onset seizures.

Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.

326,000 school children through age 14 have epilepsy.

570,000 persons over the age of 65 have epilepsy.

By 20 years of age, one percent of the population can be expected to have developed epilepsy.

By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.

Who is most likely to develop epilepsy?

10 percent of children with mental retardation

10 percent of children with cerebral palsy

50 percent of children with both disabilities

10 percent of Alzheimer patients

22 percent of stroke patients

8.7 percent of children of mothers with epilepsy

2.4 percent of children of fathers with epilepsy

33 percent of people who have had a single, unprovoked seizure

These statistics are very real. As parents we need to educate ourselves about seizures, and we need to advocate and fight for our children passionately. And if these words aren't enough, listen to one of the world's top experts in Pediatric Neurology;

"... early recognition, a careful diagnostic evaluation, and proper treatment may allow some children to attain seizure control and to achieve a normal, or at least much improved, level of development. Thus, there is the opportunity to have an important impact in the lives of these unfortunate children and their families."

~ W. Donald Shields, David Geffen School of Medicine, UCLA, Head of Pediatric Epilepsy Department at UCLA

Taken from Dr. Shields fascinating article on Infantile Spasms entitled, "Infantile Spasms: Little Seizures, Big Consequences" that
can be found in full here.

If you suspect that your child, or a child you know is having seizures, I urge you to seek out the best doctors in your area. For a child, especially a child with development delays or other issues, moments in development are far too precious to waste. Spread the word.

Tuesday, October 28, 2008

Chocolate Sugar High, 6 year stats and video!

Last week was a big week for our Jenelle as we celebrated her 6th Birthday. On the evening of her birthday, we celebrated with double chocolate cake after dinner. Jenelle really enjoyed that, and then experienced a sugar high beyond belief. Fortunately it was short lived and Jenelle didn't have a problem getting to sleep. remind me next year to avoid chocolate so close to bed time.

On Friday, Jenelle had her 6 year check up with Dr. Patel. Jenelle is now a whopping 50 pounds, and 48 inches tall. 80th percentile for weight and 50th percentile for height. The school nurse had told me that Jenelle is showing signs of Scoliosis, so Dr. Patel put in for some x-rays. We will have those done this Friday afternoon. Dr. Patel also put in a request for the endocrinologist regarding the precocious puberty issue, and warned me we could be looking at a 6 month wait as CHOC's endocrinologist are overwhelmed. Jenelle got 4 shots and is now finally caught up on her immunizations.

We had a very busy weekend this weekend and celebrated Jenelle's birthday at the Storyteller Cafe at Disney's Grand Californian. Jenelle usually loves looking around and the attention from the characters, but this time she was very cranky. We think it could have been because of her shots. Also this weekend, I finally got an opportunity to catch Jenelle vocalizing on video! She was in her room playing by herself as I was trying to catch a nap in the other room. All of a sudden, I could her her small voice talking to herself. I grabbed the video and tried to sneak up on her to catch it on video, but unfortunately stepped on a toy that made music. At the very beginning of the tape, you can hear her saying "la la la la la", but the she stops when she heard the toy, and then decided not to perform. The video is below.

Sunday, Jack and Jenelle were "welcomed" into the Catholic Church at the monthly baptism ceremony. Jack is in 2nd grade this year and will be going through First Communion. Because they both were baptized in the Episcopal Church, and because the Catholic Church recognizes the same sacrament, in order for Jack to continue with First Communion his previous baptism had to be officially welcomed into the Catholic faith. While Jenelle will probably not go through First Communion, we thought it was special to have them both welcomed at the same time.

Here are some wonderful photos from this past week. Jenelle and her chocolate sugar high with Daddy and Jack sharing on the fun, and a photo of the Welcoming ceremony. Also, the video below is one that is sure to warm your heart. Right at the beginning you will hear Jenelle's sweet angelic voice. Enjoy!

Jenelle's Chocolate Smile.

Daddy & Jack enjoying cake.

The family after the "Welcoming" ceremony with Father Bill.

Friday, October 24, 2008

Sarah Palin on Special Needs

In case you missed it, Vice President Nominee Sarah Palin gave a speech today where she outlined the McCain/Palin plan for special needs. Here is the text of that speech.

October 24, 2008
ARLINGTON, VA -- Governor Sarah Palin today delivered the following remarks as prepared for delivery in Pittsburgh, PA, at 9:00 a.m. ET:

Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives. John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them.

But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me. When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose. And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake.

And the truest measure of any society is how it treats those who are most vulnerable. As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs. One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need.

Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy. Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP -- an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that -- but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity -- and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice -- public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs. That's why John and I will direct the Department of Education to clarify the statute administratively.

We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve. Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child.

And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open. Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students.

Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options. In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act.

To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA -- establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark.

In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life. For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age. But it would make a lot more sense for these centers to focus as well on infants and toddlers.

This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation.

As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now. The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well.

Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice. As families across America know, the care of special-needs children requires long-term planning, and especially financial planning.

A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort. Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements.

They fear that Senator Obama's tax increase will have serious and harmful consequences -- and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused. Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same.

John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families. Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man -- and I saw in him all the things I wish for Trig in just a few years. Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place -- and so many others like it -- shows the good heart of America.

They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you.

Thursday, October 23, 2008

Mental note to self...

Remind me next year not to give Jenelle chocolate cake at dinner before giving her a bath and putting her to bed! She wiggled and giggled so much, I thought she was going to seriously hurt herself in the bath, and then I worried that she'd never fall asleep!

Thankfully, her drugs kicked in! ;)

Wednesday, October 22, 2008

Happy 6th Birthday Jenelle!

Six years ago today our sweet little girl made her way into the world and into our hearts. We are so blessed to have her in our lives, and for all that she has accomplished. Here are some recent photos to share.

This photo was taken Sunday afternoon on Jenelle's favorite ride at Disneyland - the tram! We went to Disneyland after participating in the CHOC Walk earlier that morning. Not the smile we got last year, but then again it had been a long day and she was worn out.

Here are the kids at the pumpkin patch last Saturday. Jenelle is wearing her new "chewelery", which is a device to help keep her from biting her arms and shirt. She really likes it and is using it appropriately.

Always ready to pose for the camera!

Last night, I made cup cakes for Jenelle to share with her classmates. Today the typical students will be in her class for inclusion. This is the first time I have ever made cup cakes for Jenelle... simply because with her improved eating skills, she can actually eat them now! Of course, Jenelle's favorite is chocolate.

And here is one of the family at the crack of dawn watching the sun rise shortly before the beginning of the CHOC/Disneyland Walk in the park last Sunday. Thanks to all who sponsored our team, and to the family for being a good sport to wake up at 5:30!

Happy Birthday Princess Boo!

We love you!

Monday, October 13, 2008

The Mommy Wars have entered Politics!

A few weeks ago, I got an e-mail from a mom I know in one of my special needs Internet support groups. The e-mail asked me to join her in a group called, "Special Needs Moms against Sarah Palin." While I am friends with this mom in all that we've shared and been through together as special needs moms, this is one request from her that I couldn't support.

Before I go further, I will let you know now that I am a registered Republican, and I have already cast my vote for McCain/Palin via absentee ballot (sorry, you can't change my vote now!) But this issue is more than just politics to me. If I were supporting "the other guy", I would still be offended by a group of moms opposing another mom for her decision to follow her career. And by no means do I consider myself to be a feminist. I simply believe that a woman can have both; a career and children. And I know for a fact - it is possible that a Mom can work full time and raise a child with special needs. Especially a child with complex medical issues.

I will admit, I had no choice when I had to continue working when Jenelle's medical issues became a priority. My job carries the medical benefits we desperately needed at the time. I didn't have the luxury of quitting my job to attend to her needs 24/7. I had to find a way to make it work.

The first glaring questions about my continuing to work came from Jenelle's first neurologist. He flat out told me to quit my job so I could enjoy the few months or years we had left with Jenelle. This doctor refused to try the Ketogenic Diet for Jenelle, because in his words to me, "The fact that you are still working tells me you are not committed to your child and that you are not committed to do this diet!" It was horrible, and I cried for days. I felt like my job was an albatross hanging from my neck. Something I couldn't get rid of because I couldn't pay the medical bills.

And then, I received some of the best advice I'd ever heard from another special needs mom that works full time. She told me, "Kelly, your job is to be Jenelle's mother. You are not her doctor, nurse, teacher, therapist, bus driver, aide or social worker, you are her mother. That means you are the one who loves her. You get to kiss her after a blood draw and to hold her in the night as she cries or comfort her after a seizure. You are her Mother and the only requirement of you is to love her unconditionally and to advocate for her passionately. Let the others do their job!"

With that advice, it became clear to me. In the world of special needs, none of us can do it alone. While I admire all the special needs moms who do stay home and who's lives revolve around the complex medical schedule of their child, I am thankful that I have found what works for me. I am thankful for Jenelle's wonderful therapists, teachers and doctors. And to borrow a phrase from that woman in the "other" political party, it takes a "village" to raise a special needs child.

One last thought... why is it the Mom has to be the one to stay home with the sick child? Why can't a man be as involved or more in the life of a special needs child? I know quite a few Fathers who play a very significant role in the life of their special needs child. Brett is one of them. While the divorce statistics are very real when it come to raising a special needs child, a couple has to take parenting to another level and become team players to work together when they have a special needs child. Eighty percent end up divorced, ninety percent if that special needs child dies. Those statistics are frightening, and very real! If parents can't work together, then they are only working against themselves.

So while this election has surprised me at times, I was shocked to see the discontent some women have for the choices other women make. Who are we to presume Sarah Palin isn't involved in the lives of all of her children? Who are we to demand she stay home and attend therapies with her disabled son? I'm positive Sarah Palin has the resources behind her to help her make the best decisions in regards to her special needs child. Maybe more than the average American. Who are we to question her love and devotion, when other families find it can work in non-traditional ways.

Why do women need to beat each other down for the choices they make? Personally, I'm tired of liberal women defining what women should be. Yes, I identify greatly with Sarah Palin. We are both working mothers with nothing but love for family and love for this country. God bless any family dealing with issues surrounding special needs and the individual choices special needs families have to make each day. Who are we to judge one another?

Thursday, October 09, 2008


Last night, Brett and I were sitting at our dining room table chatting about the events of the day, when Jenelle walked up to the table, put her hands down on the table, looked at her Daddy and said, "la la la la la la la la la!"

We stopped talking mid sentence. I think my mouth dropped open. We stared at Jenelle and then looked at each other in disbelief. And then as if sensing our doubt, she did it again... and again!

Brett thinks it sounded more like a "ya ya ya ya ya ya" and I thought it had more of a "la" sound. Either way, she was definitely vocalizing. I immediately went to grab the camera to capture it on video and unfortunately stage fright took over. I am determined now however to catch it on video and will share it all with you when I do! Brett gave her the biggest hug and said, "Sweetie, we didn't know you had so much to say!" Which of course made her giggle.

Sometimes I wonder if Jenelle reads my updates as I just recently posted about my concern as to whether Jenelle will ever find spoke language. Or maybe Dr. Shields (who is the best pediatric neurologist in the world) is right and that given a little more time, Jenelle will continue to amaze us with her continued progress and speech for Jenelle is not a lost cause! Or maybe all of you are sending up the right prayers for our girl (keep it coming!) No matter what the reason, we will gladly take anything we can get from Jenelle.

As Jenelle's 6th birthday approaches, I can't help but look back on all that we lost with Jenelle because of the inadequacies of her first neurologist. What more could she be doing if we hadn't lost all that time searching for answers and jumping through hoops?

It took three years to see her smile, five years to see her walk, and now almost six years to finally hear her voice. A beautiful, angelic, sweet little voice trying desperately to say something to her Daddy.

Thank you for the thoughts and prayers - please keep them coming! ;)

Friday, October 03, 2008

Jenelle's Tri Annual IEP

(It has taken me a few days to draft this for you all. There was so much to discuss about the IEP, and our lives have been very busy of late. I'm sorry this update is long, but there are many good things to report. Enjoy!)

“Before we start this meeting, I’d like to say something. I hope you know that your daughter is an absolute miracle. In all my many years of being a physical therapist, I’ve had maybe one or two kids like Jenelle. I know that I should never put limits on a child, but when I first met Jenelle 3 years ago, I was convinced there was no way she would ever sit up, no way she could ever stand, and I certainly didn't expect she'd ever walk. Jenelle is an absolute miracle!” ~ Jenelle's Physical Therapist Sarah

An IEP meeting (Individual Education Plan meeting) is a meeting that takes place with teachers, parents, therapists and advocates where a n specialized education plan is discussed and put in place for a child. Every three years, a school district will "re-evaluate" the child in all areas of service, and then hold what is called the "Tri-Annual" IEP meeting. Jenelle's Tri Annual IEP meeting was held on Monday, September 21, and lasted 4 and a half hours. Jenelle's Tri Annual IEP went very well and all of Jenelle's current services will remain in place for another year. After discussing services, we reviewed each of her annual goals, and replaced the ones she has met with new ones. At times it got emotional when we acknowledged how much Jenelle has achieved in the last three year, and other times it was humorous when we discussed Jenelle's unique personality that is beginning to blossom.

So, what has changed with our girl in 3 years? Jenelle has many scattered skill levels. It is hard to pinpoint an exact age of development, but for the most part her scattered skills range from 3 months to 3 years old. By far the biggest changes were with her eating and gross motor skills. Jenelle has almost fully met all of the skills needed in Physical Therapy (gross motor skills) to qualify as having full independent function. She sits up, stands, walks with ease while using a walker at school and is slowly being taught how to use a cane. Once she has mastered stairs and uneven surfaces, Jenelle will no longer need Physical Therapy. Her therapist estimates we will achieve that sometime before her next Tri-Annual IEP. Jenelle is definitely showing consistent weakness on her left side. Although her MRI scans show no evidence of brain bleed, she consistently acts like a child who might have suffered a stoke at some point in utero. Her other biggest achievement - food. Food is a huge motivator for Jenelle, and was mentioned many times, by many different therapists. This kid loves to eat, and is progressing nicely and even mastering the use of a bent spoon. While we are no where near being independent from her g-tube, the changes in her diet and her ability to eat more table foods is comforting and makes our daily life a bit easier. (I no longer have nightmares of us having a major earthquake and me running out of jarred baby food or formula!) In all, Jenelle's gross motor skills have progressed from the developmental level of a 6 month old, to that of an 18 month to 2 year old.

The smallest area of improvement belongs with her fine motor skills. While I was hoping for larger improvement in that, Jenelle's fine motor skills have progressed from the developmental level of a 1 month old to the development level of a 3 to 6 month old in fine motor skills area. She ranks poorly on this mainly because she refuses to use her hands, and her inability to speak. Once they explained in more detail all of the things that need to be met with fine motor, I understood why she scored so low. At our last appointment with Dr. Shields, I asked if we were beyond finding verbal language for Jenelle now that she is older than age 5. Dr. Shields felt that due to Jenelle's delays, and her significant improvement since obtaining seizures control, it would be wise to give her until age 7 to find some spoken language. If after age 7, Jenelle still does not have any spoken words, it would be very unlikely that she will ever be able to speak. While at this point it is a long shot, at least there is some glimmer of hope. Dr. Shields felt it would be best to start to concentrate more on teaching Jenelle how to communicate with assistive technology,and her school has already started this a year ago. When I informed the IEP group of Dr. Shields' recommendation on the speech, they were relieved to hear his opinion, and decided to continue her speech therapy another year instead of dropping it altogether based solely on her age.

With every report from every therapist and teacher (PT, OT, Speech, Vision, PE, and Orientation and Mobility) I heard a lot of similar things; Jenelle is a beautiful and determined little girl who is very social, very busy and will do anything for food. And of course, as Murphy's law would have it, two days after Jenelle's IEP where I told the team it had been months since we'd last seen a seizure, Jenelle had a grand mal. Her first in many, many months. So far, we are watching things carefully and I am chalking this one up to maybe the molar issues. In all, Jenelle continues to do well and we are so blessed to have her involved in a wonderful program at school and through our County Department of Education.

Once we were finished setting goals for the coming year, my brain was mush. I couldn't believe the meeting had taken over 4 hours, but really it all went quickly as it was so fascinating to hear about all the wonderful things Jenelle can do. I left feeling very inspired and very hopeful for our little girl. As mentioned at the beginning of the IEP, Jenelle is an absolute miracle. We are so blessed to have her in our lives.

Thanks for the continued thoughts, prayers and support. As always, I'll keep you posted!

Thursday, September 11, 2008

Routine update from trip to UCLA

As mentioned below, earlier this week we passed the 5 year "anniversary" of the day we got the news that Jenelle had epilepsy. I wish I could have told myself back then, that today we would be seizure free, as that might have made the journey a little easier. Today Jenelle had a follow up visit with Dr. Shields at UCLA, and when they asked the date of her last seizure, I really had to think long and hard about it. Jenelle's seizure control has been exceptional, and the last time I saw her have one was maybe a month or more ago. (And I'm knocking on wood as I type that, so you should knock on wood as you read it!)

After celebrating Jenelle's new achievements, and talking UCLA football with Brett, Dr. Shields discussed some of the new behavior issues we are seeing in Jenelle. Specifically, pulling out her hair, the biting, the crying and some small signs of possible early onset of puberty. The behavior stuff is easy to fix, and we are increasing her Risperdol to match her weight increase (Jenelle is now a whooping 48 pounds!) Jenelle ran out of Risperdol a few days ago, so I didn't re-fill it as I was waiting for this appointment. I honestly didn't think it was helping until last night I found a note in her backpack from her teacher asking if we had changed any medicines. Her teacher noted that she did not see the "self control" she had seen previously in Jenelle. That advice is enough for me to agree to give it a longer try.

As for the puberty issue, we have been told that children on seizure meds can often have an early onset, anywhere between age 6 to age 9. Jenelle will be 6 in October, so Dr. Shields thinks a referral to an endocrinologist is a good idea. We aren't anywhere near discussing something like "The Ashley Treatment" (where you can surgically remove female organs to avoid puberty), and Dr. Shields said there are some advantages to consider with early onset. He told us that research has shown for every year you avoid puberty, you guarantee at least 2 inches of growth in height. So if Jenelle were to enter puberty early, it might help keep her small. Again, we are no where near making any decisions about that, but we agree it would be best to start watching it closely now.

Everything else is going great and we will go back to see Dr. Shields in March of next year. Last week, Jenelle started school in the same class as last year with the same teacher. She seems to be happier back on her normal schedule. As for an update on the molars, one has finally cut through and another is giving us some problems. Now that we know what to look for, we've been helping her chew to get them to cut easier. So far, she seems to be taking it all in stride.

Five years ago, we had no idea what the road ahead would be for our Jenelle. The same is true today, but with the love, support, prayers and positive thoughts from all of you we know we will make it through. Thank you so much for everything.

As always, I'll keep you posted.

Tuesday, September 09, 2008

5 years ago today...

Five years ago today, we received a phone call with news that changed our lives forever. Jenelle's neurologist called with results from her EEG indicating she had Infantile Spasms.

They say that time heals all wounds, and in some instances that has been true for us. Each year, this anniversary gets easier to pass for me, but this year is a little more difficult as I have been watching another child start a similar journey. I know the difficult road they have ahead and am thankful to have that part of the journey behind us.

When we got the news about Jenelle, I was relieved and a bit devastated. I was relieved that we finally had a name for what was going on, but devastated at what I read about her condition. Every parent hopes the best for their child and that is all we ever wanted for Jenelle. Part of me wishes I could go back in time to tell myself 5 years ago that it would be a difficult journey, but it would be OK. Jenelle is not perfect, and she is not seizure free, but she is healthy and she is OK. I realize now, once we controlled the seizures, Jenelle made more progress. I don't think we could have done anything differently, except maybe get her to be followed by the best expert in the country sooner than we did.

I watch videos of that first 24 hour EEG and can see so clearly now the seizures I missed all that time. I'll be honest in admitting that even with the EEG confirmation that Jenelle was having seizures, it took many months for me to begin to actually recognize what they looked like in person. I consider them subtle, silent thieves of my daughter's most precious moments during her development. To think of seizures being anything less than monstrous is an understatement.

Even with the good times we are enjoying now with her seizure control, it scares me to know that at any moment, without any warning, those seizures can rear their ugly head and take more away from our Jenelle. That fear does not stop me from enjoying the present, but it does help me remember to stay grounded and realistic.

If I had known 5 years ago what I know today, would the journey have been any easier? Probably not. But from our experience, I appreciate the hard times and rejoice in all that we've accomplished. Jenelle has more to prove to us all, and I am so proud for all she has taught me.

Thursday, September 04, 2008

"Sometimes even the greatest joys bring challenge.

And children with special needs inspire a special love.

To the families of special-needs children all across this country, I
have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and
advocate in the White House."

~ Sarah Palin

Regardless of how to plan to vote, I just need to say, that as a special needs parent I can't help but get choked up when I hear that. Way to go!

Thursday, August 28, 2008


I know that we are blessed to have Jenelle, but there are many times I feel doubly blessed because of Jack. Really, we have two very different experiences with our kids; one typical and one with very challenging needs. We get to experience both sides of the coin, and always I worry whether or not Jack realizes how his childhood is so different compared to other typical families.

Jack is 7, and it has been such a fun age. He's gaining confidence and he's so inquisitive. Jack was almost 3 when Jenelle's medical issues became a priority. While at times it hurt to hear him ask, "Why can't she play with me?" there were other times where I was thankful for his innocence. When he was younger, we used to explain that "Jenelle has a broken brain", and that the doctors were trying to fix it. He was satisfied with that explanation, and seems to have gone on about his life almost as if he were an only child at times.

As he is getting older, I've noticed the old "broken brain" excuse is getting tougher to sell. It may have started with our involvement with Challenger Little League earlier this year. I think that experience was his first introduction to the fact that there are other kids like Jenelle. Since Challenger League, he has said some things lately to make me realize that he is finally understanding how Jenelle is so different.

When our dear friend Mollie passed in June, I sat down with Jack and told him what had happened and why Mommy and Daddy were so sad. This was my first attempt at explaining the real world to Jack, without really trying to pass off the "broken brain" excuse. Though he had never met Mollie, he know all about her from our friend Jim (Mollie's Uncle.) He knew she had many surgeries, and he knew she was similar to Jenelle.

Recently, when Jenelle had her abscess tooth, I took Jack with me to Jenelle's doctor's appointment. Jack sat attentively and listened to the doctor and I discuss Jenelle's tooth. On the way out to the car, Jack suddenly asked, "Mommy, will Jenelle need surgery?" Knowing he had just listened to the conversation I replied, "We don't know, but yes, it's a possibility." Then he asked, "Mommy, if Jenelle has surgery, will she die?" My heart stopped a moment, and I realized he was making the connection to our friend Mollie. Mollie died after slipping into a coma during surgery. I reassured him that was not a possibility with Jenelle's tooth.

Sometimes I worry that he is far too experienced for his age. Later that night, we talked about life with Jenelle. I asked Jack if he knew our home was different, and he said yes. He realizes that his younger sister is not like other kids, and he simply said, "Jenelle is different, and she has a broken brain" almost verbatim from what we've always told him. And after repeating that mantra, he looked at me and said, "Mom, when are the doctors going to fix her broken brain?" In the past I always responded that we were working on it and the doctors were trying to help Jenelle. Realizing now that our innocent excuses are too childish for him now, I answered honestly; "Jack, it may never be fixed. Jenelle may always be like she is. A little different from others and always improving." He simply replied, "Oh", and seemed content.

Simple answers about Jenelle aren't easy. As Jack grows up, he deserves to become fully aware of of how she is different, and sometimes those answers need to be truthful. While at times his keen understanding of the special circumstances surrounding life with Jenelle are heart wrenching, at least it is honest. I realize the need now to share more detailed information with him about Jenelle's real issues. While it is a common phrase to apply to special needs kids, it applies to typical ones as well; kids are resilient.

Jack makes me so proud in the ways he loves his sister. He respects her disability, and it doesn't stop him from thinking life is different in any way. In the end, he will be better because of it.

Friday, August 15, 2008

All pooped out! Literally!

Last night, I noticed that Jenelle's mic-key button (the entrance for her g-tube) was leaking. When I checked it, I realized the balloon was broken and we needed to switch it out for a new button. Something I've done many times in the past. As I pulled out the old one and went to replace it with the new one, some fluid came out to distract my view. I tried to feel my way in and felt some pressure as I pushed it in. As soon as it was in, Jenelle immediately started screaming, crying and writhing in pain. Not her normal reaction to changing the mic-key button, which is usually as simple as changing a pair of earrings. Worried that I may have punctured her abdominal wall or stomach, we ran to the ER.

The wait was a bit long, and Jenelle screamed constantly in the waiting area. Definitely not normal for our girl with a high tolerance for pain. I was sorta surprised they didn't take us right away with her screaming alone. Once we got back into a room, a young intern checked it out and thought she was OK. When the Attending came in, Jenelle immediately became quiet. The Attending recognized us from past visits, checked the site and said it looked fine. He started to tell me me what to look for in signs of infection and was about to send us home when Jenelle resumed her screaming. Having remembered her from past visits, he said that was the worst he'd ever seen her in pain, so he was immediately concerned and ordered an x-ray.

As it turns out, Jenelle was severely constipated and my putting pressure on her tummy earlier that evening when I replaced the g-tube added gas to make her pain worse. Two enemas later we were on our way home around 2:00 a.m. (and after watching all of the Olympics for the evening.) Looking back, Jenelle has been on the anti-biotic and Motrin all week for her teeth, and that may have had added to her constipation. I'm relieved it was something simple to fix. Thankfully all is well, and Jenelle is officially all pooped out!

And in case you were wondering, the teething is going OK. Her pain has subsided some and we are using the Motrin with less frequency. Unfortunately, it looks like she is started to get the molar on the other side as it has started to swell. We're using a teething medicine a friend recommended, so hopefully that will cut back on the use of the Motrin, which while also constipating can upset the stomach with extended use.

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

Thursday, August 14, 2008

The controversy about "Tropic Thunder"

Well, you may have read in the news about the recent uproar from the disability rights community about the new comedy "Tropic Thunder" starring Ben Stiller and Robert Downey, Jr. The groups are outraged and insulted by Ben Stiller's character playing the role of a mentally handicapped person, and the excessive use of the word "retard". I have not seen the movie, but I have heard a clip on the radio of some of its dialogue using the term "retarded." I didn't really find it to be offensive. Funny yes, offensive not so much. In fact, the dialogue I heard from Robert Downey, Jr.'s character was describing famous roles in Hollywood about the mentally handicapped including Rainman and Forrest Gump. In addition to repeating the word "retarded" in that clip, I also heard the word "autistic", which I think is encouraging that Hollywood is at least trying to use the proper names to associate to mental handicaps, to some extent.

I realize my opinion is in the minority here, and that many in our small special needs community are outraged. That said, name calling hurts. We should always teach our children to respect others. However, in my opinion, I would hate to see that in our effort to criticize a movie for his interpretation, that the end result is that we've placed a larger stigma on the word "retarded." Personally, I find the words "mentally retarded" to be the most useful way to describe Jenelle because she has no underlying diagnosis and she is "mentally retarded." I worry that we are fighting the wrong battle.

Recently I read a fascinating blog post by author Stephanie Klein, who also happens to have a handicapped child. In her post entitled "Is Special Needs a Retarded term?", she says, "I have no doubt, one day, people will refer to the word "disability" as derogatory..." and I couldn't agree more. Like Ms. Klein, I find humor in dire situations. Sometimes that humor comes across as being offensive to others when I say my daughter is retarded. Don't be offended. I am her Mother, and it doesn't offend me. But where do we draw the line? Am I supposed to give up my sense of humor in dealing with such emotional issues because now I am supposed to to set an example for others? I think not, because I am human. For me, laughter even in dire circumstances is an important part of who I am and how I cope with being the mother of a special needs child.

Arguments such as the controversy against the movie "Tropic Thunder" only create a negative stigma associated with the mentally handicapped community and the use of the word "retarded." I absolutely agree, the term used in certain context can be offensive. However, given the context of this movie, which is meant to be a satire, I think using this movie as a platform against derogatory terms against the disabled in general overshoots the real goal.

The bottom line is we need to teach and practice respect for others. Making fun of some one's mental or physical abilities is never acceptable, unless of course that person can also laugh at themselves. Today I watched the wonderful video below that has been circulating the special needs community. The message is clear; the goal is respect. If we focus more on that, then maybe we won't need to protest movies or make a huge deal out of using certain phrases. Isn't this a universal goal we can all agree to strive for?